Adenoid Cystic Carcinoma of the breast

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BrendaL
BrendaL Member Posts: 4
edited July 2018 in Less Common Types of Breast Cancer

I was just diagnosed and I am looking for any info or experience anyone may have on Adenoid Cystic Carcinoma of the breast

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited November 2008

    Hi Brenda,
     
    I'm very sorry about your bc diagnosis. No time is good to get a cancer diagnosis, yet holiday time can be particularly difficult for various reasons. I am glad you found this forum and hope you'll turn to it whenever you desire.
     
    Here is what bc.org says about your diagnosis: This is an uncommon type of invasive breast cancer. It starts in the glands of the breast and grows into the normal surrounding breast tissue. (This type of cancer is more common in the salivary...glands.)
     
    I understand Adenoid cystic carcinoma (ACC) breast cancer to be a rare tumor type, involved in 0.1% of breast cancer tumors. It presents commonly as a painful breast mass. It has a favorable prognosis, and treatment is usually lumpectomy and radiation (the later due to it's slow growth, which surprisingly causes it to have a higher in breast recurrence rate. It tends not to involve lymph nodes and has a low metastatic rate. Most commonly, hormone receptors (for estrogen and progesterone) are negative (http://www.issoonline.com/content/3/1/17).
     
    There is a search tool on this forum. Typing adenoid cystic shows one other recent ACC diagnosis, so maybe you can catch up with her: 
     
    Hope this helps,
    Tender 
     


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  • BrendaL
    BrendaL Member Posts: 4
    edited November 2008

    Tender,

    Thank you.  I have spent hours researching and have found some info but there really isn't much out there.  Waiting for my next appointment but it could be as far off as January

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  • brawleymom
    brawleymom Member Posts: 4
    edited December 2008

    Hi Brenda--I am almost two years out from my dx and understand all your fears and questions.  I am STILL looking for answers--that is why I am on at 1:30 am--can't sleep so I did the usual and looked for more info on ACC/breast.  Please check our the rare cancer forum and also feel free to email me at molly.brawley@nilesschools.org or check out my blog at  www.mebrawley.blogspot.com

    When I was diagnosed, i told myself I wanted to help anyone else who ever was diagnosed. Something good has to come of it.

    Molly 

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  • CLPP76
    CLPP76 Member Posts: 1
    edited January 2009

    Molly,

    I was diagnosed with ACC the day after Thanksgiving & have since had a lumpectomy.  I'm told Radiation is a given, but go to see the Oncologyst tomorrow to see about Chemo... did you have Radiation & Chemo?

    Thanks!

    Corey

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  • bcindy
    bcindy Member Posts: 3
    edited January 2009

    Hello Corey,

    I was diagnosed with ACCb the end of December 2008.  I had a lumpectomy, then a re-excision with sentinel lymph node biopsy.  My biopsy came back negetive but unfortunately, I have not been able to get clear margins so on Feb. 4th I will be having a mastectomy with tissue expander/implant.  Molly has been a great source of information and support. She was especially helpful during those first few weeks that seemed so incredibly hard to face! 

    In reading Molly's blog and participating on the  http://www.rare-cancer.org/ in their forum, I have read that chemo has not been proven to be effective on this type of cancer.  Most of the women that have lumpectomies have radiation from what I've read.  You may want to join this forum.  Sharon the administrator for the Adenoid Cystic Carinoma of the Breast(and whole site I believe) is very knowledgable.  I too have a blog that I started to help me work through the various situations that happen with breast cancer and maybe it will help people down the line who will be diagnosised.  While this is considered a rare cancer, we are not alone. 

    I'm hoping things are going well for you.  What did the oncologist suggest for you?  Take care and keep us posted.

    Cyndi

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  • 71346
    71346 Member Posts: 4
    edited February 2009

    Hello Brenda,

    I hope you are doing well and are on the road to recovery.  I was diagnosed with AdCC of my left breast in 9/2006.  In 10/2006 I had the lumpectomy along with 1 centinel node removed which was clear.  I required a second surgery to get clear margins.  In 1&2/2007 I had 37 radiation treatments and have done very well since.  My oncologist offered chemo, if I wanted it, but said I would only gain 2-3% benefit so I declined and have no regrets.   I believe from everything I have read and been told, that we all should have a good outcome.  My sister told to repeat this when I had any doubts "and all will be well"...it calmed me and perhaps it will help you.  Take care and report back so that we know how you are doing.  Thank you.  Rita K. 

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  • movetomaui
    movetomaui Member Posts: 75
    edited December 2012

    Hi I'm movetomaui (Julie) and I was Dx with Adenoid Systic Carcinoma on 9-4-12.  If anyone ever has any questions for me please let me know.  I will also keep an eye on this thread to see if I can offer any support ♥  

    Best of luck to all those diagnosed with BC!  

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  • bcs22
    bcs22 Member Posts: 34
    edited January 2013

    I was diagnosed with ACC summer 2012 ADH found on other side. Did anyone else opt for a skin-nipple sparing mast? I will check out the blogs mentioned and I have been to rare cancer site. Thanks for input.

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  • movetomaui
    movetomaui Member Posts: 75
    edited January 2013

    Hi bcs22 ... I was diagnosed with AdCC of the Breast on 9-4-12.  Had a Lumpectomy that didn't achieve clean margins and because my mass was rather large (+5 cm) I opted for a Mastectomy.  My Mastectomy was skin/nipple sparing and I had a tissue expander placed.  Pathology from Mastectomy showed clean margins!  If I had opted for another Lumpectomy due to the size of my mass, I would have been a canidate for Radiation Therapy.  At the moment I am "filled to capacity" and awaiting my exchange surgery that is scheduled for 2-12-13.  Follow up will be Mammo of unaffected breast and MRI in 6 months.  Then annual Mammos and CT scans.  Hope that helps.  Please let me know if you have any questions.  I would be more than happy to describe more in-depth the skin/nipple sparing Mastectomy.  

    Although I still have my exchange surgery in my future, I really am happy that I chose to have the Mastectomy.  Getting rid of all of the breast tissue I believe will give me the best outcome and not having to subject my body to Radiation just made sense.

    Good luck to you on your BC journey.

    Julie

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  • bcs22
    bcs22 Member Posts: 34
    edited January 2013

    Hi Maui. I think I'm reading your post on the rare cancer site. But just in case, I'll post here as well. I had Bi-lat skin-nipple sparing 2 months ago, no radiation. Tumor was .5 cm just under the skin. About a cm of skin was removed and submitted for pathology along with other tissue. I am in the expander stage. Chose the bi-lat because of ADH on left and family history. How are you being followed? I never saw an oncologist. Breast surgeon said she would so follow-up.

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  • movetomaui
    movetomaui Member Posts: 75
    edited January 2013

    Hi bcs22!  You probably have read my posts on the rare cancer site.  I noticed you posted there too so I'll reply there.

    Julie

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited February 2013

    Hi Maui,  I am waiting for the rare cancer site to approve me so I can start reading and posting there. Anyway, I was diagnosed in December 2012, right breast, and had DCIS in left breast so I had double mastectomy on January 7 2013.  My tumor was 2a because it was more than 2cm in size, and my sentinal nodes were negative.  I was told by my surgeon and the medical onc. that I saw a couple of weeks later that no chemo is done because the only treatment is surgery.  On the way out of the MO's office he repeated that chemo is not done, and added "because it's not effective".  I didn't respond at that moment, and on the way home I thought about that and said to myself "what?? they don't treat it because nothing is effective??"  So now I have an appt with another MO for a second opinion regarding chemo. I don't like the 1 to 2 percent effective treatment with chemo as I read in your post, and I just have a belief that even though my margins were negative, and my nodes were negative, some cells just get "loose" somehow or are preexisting elsewhere and I'd like to reduce my chances of a recurrence somewhere else in my body.  Well, this MO I am seeing on Wednesday is supposed to be an "expert" so hopefully I will leave his office feeling confident with whatever his assessment is.  

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  • movetomaui
    movetomaui Member Posts: 75
    edited February 2013

    Hi gd2shuz!  So sorry to hear of your recent diagnosis.  I hope you will soon find the answers you need.  You are a unique case in that you have two separate BC diagnoses.  I hope that you get the approval from the Rare Cancer Forum soon because you will find so much information about AdCC and you will be able to connect with others that share your dual diagnoses. 

    My AdCC presented itself by a painful breast mass which was preceded by a breast dimple. My treatment consisted of a Lumpectomy followed by a Unilateral Mastectomy and Lymph Node removal (I had 3 nodes removed which all came back clear). Reconstruction of the breast was started at time of my Mastectomy.  The size of my mass was 5 cm and my Mastectomy did achieve good clean margins. If I had chosen to have an additional Lumpectomy instead of the Mastectomy I would have been a candidate for Radiation Therapy due to the size of the mass. I did however get 3 separate opinions (Breast Surgeon, Medical Oncologist and Radiation Oncologist) all which confirmed that NO further cancer treatments were needed for me!  My doctors all confirmed that Chemotherapy is NOT affective in fighting AdCC masses.  The best results come from surgical removal of the mass with clean margins.  I'm sure you are starting your research and may have learned that Adenoid Cystic masses can be found in other parts of the body (salivary glands primarily).  It is characterized by ER-negative/PR-negative expression and rarely has lymph node involvement and it will rarely metastasize to other parts of the body.  I have learned however in my research and networking that there are some cases of subsequent metastasis particularly in the lungs.  Follow up for me will include mammograms for the unaffected breast and MRI/CT of both the mastectomy breast and upper body.

    I really took the time to read almost all the threads found on the Rare Cancer Forum.  I found doing so answered so many of my questions and then reaching out to others there (where they shared my unique Breast Cancer diagnosis) only strengthened my personal peace with my road to recovery.

    Tomorrow is my exchange surgery!   I am so ready for my build-a-boob project to come to an end and am so looking forward to the little things … wearing a normal bra, sleeping on my side, the possibility of laying on my stomach and getting one of my husband’s massages, working out with weights (my arms need some toning bad), not having to layer my clothing, giving and receiving normal hugs, and just having a squishy boob instead of this crazy hard tissue-expander foob!  

    My best advice is to do your own research (knowledge is power) and be your own health care advocate!  Get that second and third opinion!  You deserve to be comfortable with your treatment plan!

    I am such a believer in positive energy!  I made the decision early that attitude is everything in fighting cancer!  Open your heart and mind to the positive energy the universe provides and know you have the strength to overcome any hurdle. Positive energy attracts positive results, helping you find the courage and strength to conquer all. Consciously surround yourself with optimistic thoughts, actions and people.

    Best of luck to you!  I would be happy to answer any questions you may have and will definitely look for you on the Rare Cancer Forum.

    ♥ Julie

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited February 2013

    Good morning here, Maui.  I just want to thank you for your response last night, because it did help me to feel more confident in accepting whatever my new MO says tomorrow. 

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  • brawleymom
    brawleymom Member Posts: 4
    edited February 2013

    Hi--I haven't had a chance to check in yet, although I am sorry to say I see we have new members.  Julie--you are right--our stories are almost identical!   I also want to reiterate to gd2shuz that if a medical oncologist encourages you to try a chemo for ACC you need to ask for the studies that show it works. And I am curious where you are? You said your MO was an expert...I really would like to know what he says.

    When I was diagnosed I was scared and disappointed that chemo was not a weapon that was an option...I wanted to do everything and anything to make sure it didn't come back.  When I talked to four different doctors (my breast surgeon, my MO, the RO, and the plastic surgeon) all said that the negatives of the chemo would be way worse than any positive it would bring. All said it would not be worth it. For you, gd2shuz, you have the DCIS to worry about.  What I have read in the numerous studies is that if you are "lucky" enough to have two breast cancers (with one being ACC) any secondary treatment (next to surgery) would following the cancer that is NOT ACC. So in other words, if they recommended chemo for your DCIS, then that is what you would treat.   Had you had a lumpectomy, radiation would have been a for sure for the ACC.  Like Julie said, the key is to get clean margins.  My tumor was 6 cm (HUGE) and my breast surgeon had to be super aggressive to get it all out.  Could a cell still be in there? Absolutely. But right now, I show no evidence of disease and pray that it stays that way.  I have chest xrays every six months, I had two pet scans the first two years, and blood work twice a year.  I am always terrified of the chest xrays because if ACC comes back, it usually starts in the lungs.   I've also had an MRI to check on the implant and to look at the remaining breast...that was just last year.  Just had a chest xray last week...haven't heard anything so that is good in my book. By the way, as an aside, you might want to have your Vitamin D levels checked.  There is no research to show ACC causes issues, but I am Facebook friends with four ACC sisters and three of us were found to be vitamin D deficient.  It's worth it...and once I started taking it, I noticed a big difference. (it could also be related to menopause..I am 50 and have that to look forward to.)  

    Please let us know what your doctor says on Wednesday. I learn so much from others on this site and the rare cancer site. I feel WE have to advocate for ourselves because there just aren't enough of us.

    Molly

    ACC Right Breast/2007 6 cm.  Mastectomy/Gel implant

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited February 2013

    Brawleymom, I'm in Florida. And the DCIS in the left breast was so very tiny that it was actually removed when they did the biopsy.  But I had Double Mast anyway for margins etc. 

    Doctor is Charles Vogel in the Sylvester Cancer Center in Deerfield Beach Area.

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  • bcs22
    bcs22 Member Posts: 34
    edited February 2013

    Hi gd2shuz. Sorry for you diagnosis and wishing you luck as you look for the treatment that helps you rest easiest. Is Dr. Vogel an expert in ACC? I'd love to hear what he says. I too had a BMX skin-nipple sparing. ACC on one side ADH on the other. Brawleymom I am 43 and have low vitamin D as well. I've read that this shows up in many types of cancer. I started supplements but can't say I've noticed much of a difference. Thanks to everyone for sharing. Julie I was thinking about you this week:)

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited March 2013

    BCS22, I have been told by several doctors that Dr. Vogel is "an expert" which is why I went to him for a second opinion.  He confirmed what the first MO told me, that all I need to treat this cancer that I have is the double mastectomy, and since my nodes were negative I need no other treatment.  I was psyched up to have whatever I needed, but I am relieved that nothing else is required or recommended.   I am going to have BRCA genetic testing done on March 6th since I am of Jewish heritage and also have a daughter, so I want to see whether I am positive or negative, for her sake.  As far as vitamin D, I take it, but have no idea what I am supposed to "notice" in my body.  I feel the same whether I take it or not, but I take it "because I am supposed to" lol.    So now I am just waiting to go and have my BRCA done and wait for the results.  I pray they are negative, so my daughter will have no worries for the future!   Good luck to you!  Sue

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  • downunder
    downunder Member Posts: 1
    edited January 2015


    Hi Ladies

    I am in my early 30's and was diagnosed recently with ACC in the breast.  I have had 2 surgeries as the first didn't obtain sufficient clear margins.  The 2nd surgery didn't have any remaining tumour and was clear.  Due to my age, my RO has stated that he doesn't think radiation would be ideal due to the longer term risks.  I am unsure about this due to so many research papers stating the need for radiation to control local recurrence and metastasis.  I am interested to hear what treatments you all have had and how you are now travelling years later if you are willing to share.  I am located in Australia, there is minimal information about it and a lot of drs are not aware of it.  We are investigating the potential for proton radiotherapy.  Thank you :)

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Hello Downunder,

    Sending you a warm welcome to the BCO community.

    Just a gentle heads up, this thread has been inactive for a while so you might not receive many responses to your post.

    There's a couple of forums you might like to post in as well as this one.

    Young with Breast Cancer

    Australian Sisters

    You can also check out the Help Section

    The boards can be a bit overwhelming when you first join so feel free to contact us about anything by sending us a private message.

    Best wishes to you

    The mods

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  • bcs22
    bcs22 Member Posts: 34
    edited January 2015

    Did you get any feedback? If not pm me and I can tel you what treatment plan I pursued...I was the only acc patient my physicians had treated in the US.

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  • bcs22
    bcs22 Member Posts: 34
    edited January 2015

    http://www.rare-cancer.org/forum/ucp.php?mode=logi...

    check here too

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  • Enry99
    Enry99 Member Posts: 1
    edited January 2015

    I'm new to this forum, i too is just diagnosed with ACC on the right breast and IDC on the the left bbreast. I had bilateral mastectomy on January 15, 2015 for IDC and DCIS. BS called me late this afternoon about the pathology report. I'm scheduled to see the MO next Thursday and RO the following week. I'm so scared, started reading about ACC, but there's really not much info. My Idc is 1.8 cm, nodes are clear but I'm also triple neg. I know i will need chemo with the left breast, but what to do with the right? Any information about treatment will be appreciated

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  • bcs22
    bcs22 Member Posts: 34
    edited January 2015

    http://www.researchgate.net/post/Adenoid_cystic_ca...

    A little long but worth plowing through. Also see link above. I'm sorry you have to do this, best of luck to you:) Let us know if you find any new information.

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  • NATSGSG
    NATSGSG Member Posts: 231
    edited June 2015


    Hello Ladies:

    I find this message finds everyone well...just stopping by to share this link with you that contains 535 scientific articles of Adenoid Cystic Carcinoma of the breast that I hope you will find informative and usefu. You may need to sift through the titles to find the ones that are pertinent and interesting.

    http://www.ncbi.nlm.nih.gov/pmc/?term=Adenoid+Cystic+Carcinoma+of+the+breast

    In the interim, please consider going to this site, the Society for Immunotherapy for Cancer (SITU) and see if they have anything on this disease using immunotherapy (current hot topic in cancer treatment) to treat it. Consider asking them to put you in their mailing list for any latest development.

    http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

    PPS. This VIDEO link tells you what the current hot topic in cancer treatment, Immunotherapy is. Fascinating to watch.

    http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

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  • bcs22
    bcs22 Member Posts: 34
    edited July 2015

    Thank You for posting

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  • Calandra2
    Calandra2 Member Posts: 2
    edited August 2017

    I am happy to see this forum

    Though now in August of 2017 I see it is a while since anyone has posted. However I immediately felt less alone once I found it.

    My doctors and I were surprised to get a report after neoadjuvant chemo and lumpectomy that my triple negative was actually of the adenoid cystic carcinoma of the breast variety. A recheck of the original fine needle samples agreed.

    The carboplatin and taxotere chemo did in fact shrink my accb tumor (!) and I am grateful to know that.

    Thank you for sharing the above resources.

    I would like to find out all I can and which docs might know the most about this rare type.

    Have had radiation. Now healing------and growing hair.

    God Bless


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  • Alicec138
    Alicec138 Member Posts: 1
    edited May 2018

    I was diadosed in March. I had a 4mm tumor with all clean margins. Very little information. I am 75. I have an appointment with radiation oncologist on May 31.

    I am very optimistic. I live in New Jersey.

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  • movetomaui
    movetomaui Member Posts: 75
    edited May 2018

    Hi Calandra2 & Alicec138:

    My name is Julie and I share your rare ACC of the Breast diagnosis and want to let you know you are not alone!

    Thought I would share my story/journey:

    I am 50 years old living in a Northwest Suburb of Chicago in Illinois. I have been married to my high school sweetheart for 30 years and have two adult sons, 25 and 23 years old. My oldest just got married in November and I can't wait to be a Grandma! I work as an Elementary School Secretary and have for the past 19 years.

    I've always had lumpy, very dense breasts and during my monthly cycles my breasts would often seem more lumpy. I had my first Mammo (the one you have when you've reached the magic age of 40) in 2007 or 2008 - normal reading. But a consistent painful palpable lump brought me to my Internist in August of 2012 who sent me for a Mammogram. I had also developed a breast dimple (which I now know is a warning sign but at the time thought my body was just "aging"). No mass was seen on this Mammogram so an Ultrasound was ordered. Everyone could feel the lump so it was strange to not see it conclusively even on the Ultrasound. A punch biopsy was performed the next day. Pathology came back that it was a "Sclerosing papillary lesion" but the type they suggested removing (good, cause it was painful!) A lumpectomy was scheduled. It was the pathology that came from the lumpectomy that confirmed I had our rare cancer of the breast - Adenoid Cystic Carcinoma and, they didn't get clear margins. At this point I was given two choices, either perform another Lumpectomy or have a full unilateral Mastectomy. If I had gone the lumpectomy route I would have definitely had to have Radiation (having the Mastectomy meant possibly no radiation). My husband and I decided that a Mastectomy would hopefully get the entire mass and achieve clean margins. I had a unilateral nipple-sparing Mastectomy in October of 2012 (I was 45 years old). They ended up removing all the breast tissue which included a 5 cm Adenoid Cystic Carcinoma tumor and four lymph nodes (which were all clear). They claim they did get good clean margins. A tissue expander was placed during the same surgery by my plastic surgeon. In February of 2013 I had the first of two reconstructive surgeries. The tissue expander was removed and a silicone-gel implant was placed as well as my other breast lifted (to achieve symmetry). I ended up having to also have a revision to the recon (in July of 2013) because the plastic surgeon went too big on the implant (ended up going down 50 cc in its replacement)! I call it my "Foob". Following my Mastectomy my Medical Oncologist sent me to a Radiology Oncologist for third opinion on Radiation. Based on all reports, they decided there was no need for Radiation. In hindsight, I really wish I would have had them take both breasts to eliminate the risk/breading ground of "traditional breast cancer".

    In 2014 I did develop another lump in my real breast. Because of my history, I was quickly sent back to the breast surgeon where she performed both an exam and an ultrasound right in her office. What appeared on the screen was promising (the fact that they could visually see this lump was promising to say the least) ... the lump appeared as a black roundish sac (black indicating that it was fluid filled) and she performed a fine needle aspiration. The fluid was not bloody and the breast lump almost completely disappeared--all signs that it was indeed just a cyst! I guess breast cysts are more common in premenopausal women (yep ... that's me). I also developed a lump last May (2017). It too was benign. I must remain vigilant with self-breast exams!

    Moving forward, I am currently being seen every 6 months by my Breast Surgeon and yearly by my Medical Oncologist. I have a yearly 3D Mammo of my remaining real breast and every other year I have a Chest CT Scan. While I am my Oncologist's first and only patient with ACC, he has done his homework and I am happy with his current plan of follow up.

    I was excited to just reach my 5-year Cancerversary!

    Please feel free to reply or find me on Facebook (if you're there - Julie Schachtschneider). There is a Facebook Secret Group of ACCB (ACC Breast Warriors) that I would be happy to add you to ... it's a wonderful way to connect with more of us. We are a mighty group of 26!

    I would be happy to answer any questions you guys might have or would be more than happy to share more of my story.

    I look forward to communicating with you two!

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  • patti39
    patti39 Member Posts: 3
    edited July 2018

    Hi everyone,

    I've been looking for information on ACC of the breast and just came across this site. Being just recently diagnosed with ACC of the breast, this has been a very emotionally trying time for me and my family. I had a lumpectomy in June and recently saw an oncologist where additional margin surgery has been recommended as well as radiation afterward. However, up to 30 radiation treatments are suggested which seems like a LOT and with the possibility of lung scarring and heart involvement. That is scary, too!! I was told I'm rather "Unique" to have this kind of cancer, but I don't feel very unique at this point. Reading the other comments has been helpful.

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