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Topic: ADH Club

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

Posted on: Aug 30, 2011 11:45AM - edited Aug 13, 2013 09:21AM by Chickenpants

Chickenpants wrote:

Can we start a thread on ADH (known as atypical ductal hyperplasia)?  There may be one already existing, but without a lot of hunting around, it's not easy to locate and may not be recent.

I'm 51 and have (had) no risk for BC other than being a female - non smoker, no immediate BC in my family, I'm fit, I exercise, eat well, maintain healthy weight, breastfed babies - all of that.  I feel like with every diagnostic test I endure, I keep squeezing through the skinny risk gates and have now landed with the ADH diagnosis (only 4% of women with atypical cells fit into the ADH group) and now I am at high risk for BC of some type, although DCIS is the more common association, I am also at risk for invasive.

My journey started June 28th, 2011, very typically with an (every 2 years) screening mammo, followed by diagnostic mammo for calc cluster (2mm of concern, but 9mm spread).  US found multiple cysts, but no lesion associated with the calc cluster, so on to the stereotactic VA core needle biopsy.  Results showed ADH and I'm scheduled for a meeting with the surgeon on Sept. 8th and this will proceed a further surgical biopsy - I'm thinking excisional, but I can't recall.  I will get clarification on the 8th.

Here's the dilema - from my extensive research, this conditon is like a ticking time bomb.  It's likely that I will endure future biopsies over the next 15 years as my risk just shot up 4-5 times that of unaffected (normal) women.  Anytime some more suspicious calcs are seen on a mammo, then the only way to determine what they are is by biopsy.  I will likely be on a short recall for follow up.  This for me, is more of a mental disorder.  I have small breasts to begin with, so there will definitely be constant reminders - scars and chunks missing.  The reality of this diagnosis is that there will be more to come - so stay tuned.... a large grey area indeed.  I totally understand why women would opt for a preventative double mast in this case.

Anyhow, that's some of my thoughts on this diagnosis.  I want to open up discussion around this and share links to interesting articles.  Oh, I know my chances are good that I'll never have anything more than what I have today, but still... like I mentioned, it's the mental aspect of this one - nothing concrete and always waiting for the other shoe to drop.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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May 15, 2012 03:27PM julz4 wrote:

Thanks Bre! I have been through this with my SIL. She had extensive DCIS 5 years ago & we have the same BS. In fact I met him through her. So I feel as confidant as I can at this moment knowing it's a good cure rate! But not until I have that final Path report though! Thanks....I'm a little numb right now.

DX Papillary Thyroid Cancer 2/15/2018, DX-5/15/2012, Partcial Mastectomy 5/22/201, DX-5/30/2012, Tumor DCIS/MI 2.8cmStage T1, Grade 3, 0/2 nodes, ER-PR-. 9-/25/2014 Review of slides with new Dr's at Hopkins 1.5mm invasion found.
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May 15, 2012 10:09PM JayeGA wrote:

Hi Julz, I know this is not the news you wanted to hear. My oncologist had said that DCIS was a very "treatable" result, but he's not having to take that walk!  You have such heart and compassion....I know this is not easy.  Please take it one step at a time. Do everything you can in the days ahead to take care of yourself--eat, sleep, vent, vent, vent. 

You're in my thoughts and prayers. Hopefully Thurs will start the process of answering questions. I'll be checking in with you. Take care.  Hugs!  Jaye

Jaye, ADH dx 4/2012 w/L/Lumpectomy
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May 16, 2012 08:14AM julz4 wrote:

Since I posted the BS office called & he wants to see me TODAY! In 2 hours I'm heading there. Will have more answers later today! Thank you so much! I will check back in later!

DX Papillary Thyroid Cancer 2/15/2018, DX-5/15/2012, Partcial Mastectomy 5/22/201, DX-5/30/2012, Tumor DCIS/MI 2.8cmStage T1, Grade 3, 0/2 nodes, ER-PR-. 9-/25/2014 Review of slides with new Dr's at Hopkins 1.5mm invasion found.
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May 17, 2012 12:21AM Chickenpants wrote:

Hey ladies... The original author and starter of this thread/club making an appearance.
My worry about ADH and the risks/monitoring did not last long - I was diagnosed with DCIS and an incidental finding of LCIS after an excisional biopsy and lumpectomy on September 22, 2011. That lead to an MRI post surgery to see what else was going on, for which they found something suspicious in the opposite breast. This little something was also making a joint appearance in an earlier US - one that I insisted on as I wanted both breasts tested. The LCIS/DCIS had made me a little nervous, but I was told not to worry too much about the new findings, likely some benign condition like a fibroadenoma, but it warranted a biopsy due to the busyness of the other breast. Incidentally, this new finding was never seen on any mammogram and it turned it to be a small amount of DCIS with an invasive component (IDC). A second lumpectomy on December 23, 2011 removed this new lesion and I had 7 lymph nodes removed via SNB. Nodes clear, thank goodness, but compromised margins on lesion removal. I have just finished up radiation therapy to both breasts with additional boosts to the invasive side. I survived and it wasn't all that bad. I paused in January to experience a subarachnoid hemorrhage. Survived that just fine too. There's a girl on these boards that has her signature quote something about if you fear the worst and it happens, then you've lived it twice. By the way, my recurrence risk is high, about 18% with my two primaries, so I will be taking my chances without hormone therapy because of the blod clot and stroke risk. my advise, relax and get on with living life. I tell everyone "I'm happy, I have no complaints!"

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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May 17, 2012 07:42AM julz4 wrote:

Thanks for checking in "Chickenpants".  Although I haven't had surgery yet mine is turning out to be more than we expected! 

I saw the BS yesterday & surgery is set for this coming Tuesday May 22.  In the path report it was found that my tumour is ER- & PR-....with a grade of 2-3.  Thus probably no tamoxifen for me.  But the possibility of Chemo.  We have to wait for the path report from the surgery to come back as they need to look at the other tiny area that showed up on my MRI.  With each new finding my head is spinning more.  Even though NO IDC was found in the cores.  More waiting....so far unusual results.  So many layers to my results & with each one more concern!  I keep forgetting I not with this group anymore....I hope you don't mind me popping in!

DX Papillary Thyroid Cancer 2/15/2018, DX-5/15/2012, Partcial Mastectomy 5/22/201, DX-5/30/2012, Tumor DCIS/MI 2.8cmStage T1, Grade 3, 0/2 nodes, ER-PR-. 9-/25/2014 Review of slides with new Dr's at Hopkins 1.5mm invasion found.
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May 17, 2012 09:15AM Chickenpants wrote:

Hi julz... Here's hoping you get some good news. My news was always bad, so I thought. If there was an 80 or 90% chance of good news, I swung the other way. It's very hard mentally. What they did to my body was only 20% of the whole picture, my mental end of things was most affected. I found it helpful to talk with a counsellor at the Cancer Agency. I must now learn to live with my high risk of recurrence as the tamoxifen is only predicted to give me a 30% reduction to about 12% recurrence and has too many risks and side effects for the small amount of gain. I did not require chemo due to my "lazy" cancer's mitotic rate, but grade 2 with necrosis, so thus rads for both sides. I also found it helpful to consult with a naturopathic oncologist for ways to improve my diet and add some beneficial supplements. I have chosen this over drugs and perhaps the ADH ladies should look at doing prevention diets and gaining peace of mind that they are doing all they can. I have an excellent book from the naturopath onco, if anyone wants the title, please PM me.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Jun 8, 2012 11:05PM kittycan wrote:

I can tell you, so many of you are so patient, which is obviously a quality of a patient... Anways, I only had 1 area of ADH in a milk duct on the left side. They found that when I had a bleeding papilloma removed 11 months ago.

After doing a weekend of research, I had no doubt that a cycle of tests and anxiety would not be for me, and I did not want to take Tamoxifen as I am taking nature-identical hormone replacement for hot flashes from hell. So, I decided to have a prophylactic bilateral Mastectomy, which was done in October last year. The insurance didn't even want pre-authorization, just told my BS to go ahead. Only 1 night in the hospital, a total of 1 1/2 hydrocodone, and I was walking a mile on my treadmill 2 days later. Most annoying were the 4 drains for 1 week, 2 for 3 weeks, which I kept in a fanny pack. 

Had 1 filling of the expanders to about 220 right and 300 left.  

I went from a D cup to a full B which is much better for my back, with saline implants, which were put in with the expander exchange in day surgery in February.  I have no numb spots, no nipples either, I'm still not sure if I do reconstruction but probably not, and my new boobs look super. Never looked back and doubted my decision for a second. 

The pathology found a total of 5 ADH areas in both sides. 

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Jun 11, 2012 11:27PM Chickenpants wrote:

Ah kittycan - you made the right choice and it's sitting well with you.  Not everyone would agree with such drastic measures when you don't even have cancer, but I understand very much so. The trick is to find the right solution to your problem and don't mind what others do or think.  At the end of the day, you can sleep like a baby and have that heavy burden removed.

With my risk of recurrence I must learn to make peace with it.  It's still too soon for me and cancer is fresh in my mind.  The imp sitting on my shoulder watching me is going to get punted often and eventually won't bother me so much.

Best wishes for a healthy recovery.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Jun 12, 2012 10:04AM julz4 wrote:

Hi Chicken....I have been so busy after surgery.... Yeah after! Since I'm not working because of recovery I go everywhere with DH & my boys soccer games, end of school year stuff & of course Dr's appts. Trying to busy my mind! Lol!

Anyway the surgery went good I had some problems with low heart rate but luckily was able to go home & not have to be admitted. The pain from the centinal node biopsy has been the hardest part. A lot of nerves cut & now I have numbness with burning pain. It is slowly getting better. The BS took out 2 nodes & both were B9! As for the rest. I have DCIS with 3 foci of micro invasion < 1 mm each. The tumor ended up being much larger at 2.8 cm. Grade 2/3 & still ER & PR neg. We are now waiting on the HER2 test results. I am to start RADS soon when we find out whether I may need Chemo or other Meds. Still waiting. This stuff is aggressive either way those tests come back & with me being pre menno I don't want to mess. I have kids in school & am a Grandma again to a special Miracle Grandson! I want to do all I can. I plan on getting back on the healthy way again soon. But I just decided right now I have much on my plate & want to enjoy & not drive myself with it. Many of the good supplements I already take for my BP, Cholesterol & slight heart mummur. I have to give up through RADS. A few months I can do it. As some I have had to forgo because of the biopsy's & surgery. I will get there but I will take baby steps to start so I don't get mader at what all BC has taken or could from me!

DX Papillary Thyroid Cancer 2/15/2018, DX-5/15/2012, Partcial Mastectomy 5/22/201, DX-5/30/2012, Tumor DCIS/MI 2.8cmStage T1, Grade 3, 0/2 nodes, ER-PR-. 9-/25/2014 Review of slides with new Dr's at Hopkins 1.5mm invasion found.
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Jun 12, 2012 10:31AM Chickenpants wrote:

Wow julz, you have lots going on. You're busy, breasts are busy...when do you start rads? It's not all that bad. I was expecting worse, now one month out after having both sides radiated, you wouldn't be able to tell by looking at me.

The SNB was the worst of everything they did to me. The area is full of nerves that get damaged during the procedure. I was doing too much too soon and ended up with a stubborn seroma which needed draining a couple of times, but it kept returning. Mostly better now, six months out. So take it easy.

A big hug for ya and keep us posted. There are lots of good threads in this site to offer support. Take care.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Jun 21, 2012 12:01AM mvspaulding wrote:

Well, unfortunately I am back.  I was diagnosed with ADH after an excisional biopsy in June of 2010.  Had two 6 month follow up mammos come back clean and in July of last year my BS said I didn't have to come back until 1 year.  My mammo appt is July 3rd.  I feel like there have been changes in my breast so I am getting nervous about my appt.  I have just been trying to keep it off my mind because there have been so many other stressers in my life.  I am praying that my gut feeling is wrong and I will have another clean mammo.

Dx 9/21/2015, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR-, HER2- (FISH) Surgery 10/27/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/3/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/7/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/27/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jun 22, 2012 01:58PM momoschki wrote:

Mvspaulding, 

Just curious, what changes are you sensing?  I was dx'ed with ADH in 2/11 and have had 2 clean 6 month checks and vacillate between thinking everything will be ok going forward and a more dismal attitude that I am destined to face BC at some point.  I wonder if I will ever be able to fully shake that paranoia.

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Jun 23, 2012 12:23AM mvspaulding wrote:

momoschki,

I know exactly how you feel.  I have been consumed with so much else that has been going on in my life that I have successfully put it out of my mind for quite some time.  But I am going to work at the Relay for Life in my town tomorrow which I do every year and it has got me thinking about all this again and I have just had a knot in my throat all day.  I did look up my appointment and it is July 11th not the 3rd, which made me more anxious.  I am really ready to get it over with at this point.  I guess I was nervous after my last appt when my BS said I could wait a year to be checked again.  I was wondering why I went from suggesting Tamoixifen after my surgery to remove the lump (when the pathology showed ADH) to now being able to go a year in between mammos. 

To answer your question I feel lumpiness in my left breast, which has never been my problem breast.  I have always had issues in my right breast.  I was having a lot of pain in my left breast, literally a month after I had my mammo.  I went to my OB Dr. for my annual pap and had her check it.  She said she didn't feel anything to cause the pain and suggested I take Vitamin E and try to cut back on caffeeine.  I did that and eventually the pain did go away but it took a while.  Maybe it is just nothing but I can't help being afraid after all the close calls I have had.

Dx 9/21/2015, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR-, HER2- (FISH) Surgery 10/27/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/3/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/7/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/27/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 10, 2012 12:41AM mvspaulding wrote:

My appointment with my BS and my mammo is this Wednesday.  I am starting to get scared.  Just don't really have a good feeling about this.

Dx 9/21/2015, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR-, HER2- (FISH) Surgery 10/27/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/3/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/7/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/27/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 10, 2012 02:03PM momoschki wrote:

MV,

I think I can say I know exactly how you feel.  It is the uncertainty that drives me insane and the constant revolving door of tests and doctor's visits.  What I try to tell myself before them is that even if it is the worst outcome, at least then there will be a plan to deal with it.  Of course, this advice is much easier for me to dispense than for me to listen to myself.  Do you have an anti-anxiety med you can take for a couple of days?  This helps me to take the edge off when I feel I am so anxious I just cannot tolerate it anymore.

Good luck to you and let us all know how things turn out on Wednesday! 

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Jul 10, 2012 04:58PM mvspaulding wrote:

Thanks mom, for your response.  I don't have any anti-anxiety meds and have never taken them.  Right now I feel as though I could though.  I have always been pretty positive about all this that everything would turn out ok.  This time I can't get rid of this feeling of dread.  That is why I am worried.  Hoping that I am wrong and I get an all clear.  Will post once I know.

Dx 9/21/2015, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR-, HER2- (FISH) Surgery 10/27/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/3/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/7/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/27/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 10, 2012 05:13PM momoschki wrote:

Obviously your call, but you might want to consider asking your doctor for something.  I don't believe there is any shame in taking something occasionally when the anxiety is just overwhelming (and, fwiw, I am a psychologist...)  Sometimes, especially before 6 month checks, my anxiety is so through the roof that I actually feel faint and nauseous.  In the meantime, I will be thinking of you...

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Jul 10, 2012 05:47PM awb wrote:

mvspaulding-----praying you get good clear results tomorrow.

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 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 11, 2012 03:24PM mvspaulding wrote:

I am happy to report good news!  I went in for the mammogram and then was waiting to see my BS.  She said the mammo was all clear and I was really relieved!  Then I told her the reason I had been worried is because I had felt something on my left side and was having pain there and I was surprised nothing showed up on the mammo.  She did an exam and felt it too.  Next thing I know she was numbing my breast and sticking a big needle in it!  Ouch, wasn't exactly comfortable, but she was able to confirm from that that is was a cyst (pretty good size) 3 cm, and she aspirated it and deflated it.  So, other than being kind of sore from that I am one happy girl!  Thanks for all your concern.  I wanted to report good news, because I think a lot of times on this board people only hear the bad.

Dx 9/21/2015, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR-, HER2- (FISH) Surgery 10/27/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/3/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/7/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/27/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 11, 2012 03:46PM awb wrote:

wonderful news---so happy to hear it!

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 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 11, 2012 04:00PM momoschki wrote:

Hooray!  Congratulations on your good news.  Now you can RELAX!

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Jul 11, 2012 06:09PM mvspaulding wrote:

Thanks so much!!  Smile
Dx 9/21/2015, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR-, HER2- (FISH) Surgery 10/27/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/3/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/7/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/27/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Aug 5, 2013 10:12PM Momcat1962 wrote:

Told today I have ADH. I am 50 yrs old, 4 kids, nursed the last two. 20 yrs of breast "junk: cysts, benign lumpectomy in 1998, bloody nipple discharge, MRIs, fibrocystic change, biopsies, yada yada...

Dr took a section out of my left breast 6.x5.5x2.0. Mammo in 6 months recommended. Question...surgeon said she took this stuff out. Does that mean there is no chance that some cells were missed and nothing will advance later on?

JER. 33:3 ...ADH Surgery 7/29/2013 Lumpectomy: Left
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Aug 6, 2013 09:54AM momoschki wrote:

Momcat,
I share your ADH dx. When I asked my surgeon what the chances were that the ADH would recur, she told me that she couldn't answer me, since statistics are not kept on this. An ADH dx, however, does put you at higher risk of later developing BC (either DCIS or invasive) at a rate of approx 20-25%, or higher if you have a significant family history.

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Aug 13, 2013 08:02PM InfoLady wrote:

I've just joined the forum today, although I've read a number of posts since March and found them helpful.

I had my second breast surgery in March with a diagnosis of ADH (first surgery was a papilloma).  I will be returning to my surgeon for 6-month followup in September and discussion of what to do about my breast cancer risk (tamonxifin, MRI screenings, etc.).

I have gotten incredibly frustrated with a lot of the patient-oriented material and web sites, which never seem to have the specific information I'm looking for and keep telling me to discuss it with my doctor. 

Thank you all for sharing your experiences.  It's good to know that I'm not the only one who is frustrated and anxious.

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Aug 13, 2013 11:05PM InfoLady wrote:

In preparation for my 6-month followup after diagnosis of ADH, I'm trying to do risk-benefit analysis of my options - meds, MRI screening, etc.  My attempts to do a logical, reasoned analysis on whether or not to take a cancer prevention drug are being influenced by an emotional factor that I haven't seen anything discussing here or elsewhere.

I am a highly committed blood donor with a lifetime total of 146 pints over more than 40 years.  Ever since I reached 100 pints, which was my initial goal, I have been working toward a lifetime goal of 200 pints.  If I take a breast cancer drug for 5 years, I will never be able to reach that goal, because I won't be able to donate while I'm on it (At my most optimistic estimate, it will take me until I'm 76 to achieve it).  That's 25 pints of blood that would be lost in those 5 years.   After surgery, when my doctor said we would discuss these things in 6 months, calling the blood bank was the very first thing I did.

So now, I know that I'm biased against taking the drugs and don't trust myself to make an objective decision about what's best for my health.

In truth, I don't think that Tamoxifin is a good choice for me.  I am 62 years old and the benefits are less in older women and the risks of endometrial cancer increase.  I already have early stage cataracts so have increased risk that they will grow (plus I'm extremely nearsighted and have other vision issues that have left me with less than 5% of normal vision without my glasses, so really don't want to lose any more).  I travel a lot for my job - much of the time on 6-10 hour flights, which put me at increased risk of deep vein thrombosis too.  And I worry about the mental confusion and mood swings and their affects on my very demanding job that I love.

Raloxefene would have fewer bad effects, but still would not allow me to donate blood.

And I keep remembering that years ago when I started taking hormone replacement, my Gyn at the time talked me into taking them.  And now look at how the prevailing wisdom has changed in a few years!  Who knows what we'll find out in 5 or 10 years about the breast cancer drugs.

Thanks for letting me vent.  It's hard to share this with family and friends for fear of upsetting them.

Much aloha.

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Aug 13, 2013 11:58PM ballet12 wrote:

Hi Infolady,

Oncologists are now recommending Aromatase Inhibitors for postmenopausal women who are at high risk for cancer.  The AI's don't have the DVT and endometrial cancer risks; however, they do have the vision risks which you are concerned about. I'll send a link when I find one.  I never took anything for ADH/ALH diagnosed 18 years ago, but I did eventually receive a DCIS diagnosis.  Tamoxifen was only in clinical trials when I was diagnosed, so I didn't take it.  I don't regret it, because of those side effects you mentioned. 

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Aug 14, 2013 12:07AM Momcat1962 wrote:

I have too many issues that prevent me from being able to take those 3 meds. Stinks. :(

JER. 33:3 ...ADH Surgery 7/29/2013 Lumpectomy: Left
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Aug 14, 2013 08:59AM Colleen_2 wrote:

I was just given the ADH diagnosis this week and medication was never discussed.  We have talked about mastectomies though because I have a very strong family history of breast cancer.  She told me I will have an MRI in about 6-8 months and we can decide after that.  I don't feel comfortable just leaving it for that long but I do trust her.  I guess I am just so used to all of the tests and biopsies over the last few months that it will be strange not doing anything for that long. Hugs to everyone.

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Aug 14, 2013 09:33AM ballet12 wrote:

Colleen, in most cases watching and waiting is all that is done for ADH, including regular screening (mammo, sono, MRI) and possibly hormonal therapy, so waiting 6 months is not usually considered a problem.  Have you had BRCA testing to determine if you might carry a breast cancer gene which makes you very high risk (given the very strong family history)? I While you are waiting, that might be a good thing to do.  I realize that they haven't identified all of the breast cancer related genes, so that having a very strong history is pretty compelling in itself.  Mastectomy is not usually done for ADH, but there are very high risk circumstances where it makes sense, and there are individuals who post on these threads who have done it for that reason.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013

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