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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 08:45AM - edited Aug 13, 2013 06:21AM 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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Apr 19, 2018 05:17AM Robinda2970 wrote:

Cgs, great news!!

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/2/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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Apr 19, 2018 01:49PM cgs wrote:

ADH isn't so much a tumor I don't think. It's not something they can see when they operate, which is why they use the wire guide, though to be honest, I really don't quite get how that works. Once you get the pathology back from the surgery, you'll see how much they removed, or you can ask. The scar from my adh surgery from 7 years ago is about 1.5 inches. Two weeks does sound like a long time, but I guess if you do a lot of lifting and physical support of patients, that could be why. I found the surgery easier to recover from than the needle biopsy. Good luck! Mine is scheduled for about 3 weeks from now.

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Apr 19, 2018 06:00PM Aprila1 wrote:

Well, just found out my dad passed away this morning, have surgery tomorrow. I’m a mess. Not sure how I’m feeling at this point.

Is it wrong for me to just want to go to sleep so I don’t have to think about any of this. I’m tired

Dx 9/2016, Right
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Apr 20, 2018 06:16AM cgs wrote:

Oh April, I'm so sorry. I can't even imagine. Not at all wrong to just want to sleep through it all. I've felt that way about other things in my life.This is all just so much to deal with at once.

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Apr 20, 2018 08:13AM momto3sons wrote:

I'm so, so sorry April :(...sending you hugs and prayers.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/21/2018 Lumpectomy: Right
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Apr 20, 2018 06:10PM Aprila1 wrote:

Thanks guys 😏 surgery went well. Swollen and sore. Ready to know what they find

Dx 9/2016, Right
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Apr 24, 2018 12:03PM - edited Apr 24, 2018 02:30PM by Nash5

I had my wire excisional biopsy 2 weeks ago on my right breast. Results found no cancer. Yay! 😊

Today I went in for my post op to check my incision (all looks good) and to discuss the next step of seeing an oncologist. I think I agree with my BS to go on the meds but will find out next week my choices from the oncologist. I also had my left breast examined today. After finding my lump in my right breast weeks ago that lead me to having a mammogram, diagnostic ultrasound, core biopsy (that found ADH) and then the wire excisional biopsy to remove the ADH ...my left breast is now more sensitive and painful than mysurgical breast! My BS said she feels a mass under my nipple but it could just be scar tissue from a breast lift from 2004. Hmmm...I find that weird. I did have the dr that did the initial core biopsy on my right breast weeks ago check out my left breast with the ultrasound wand in hand but he did not see anything suspicious. In the mean time my left nipple area has increased in pain and tenderness. So back to today...my bs dr felt the mass under my left nipple, but I have to wait 2 months to get another ultrasound. It's standard protocol to have 3 months between she said. I get it...it could be scar tissue (breast lift 2004) and it could be my dense breast. I understand it has only been since March 2 that I had the ultrasound but the changes I'm feeling are real and the dr felt it too. Am I jumping the gun? I found the lump that was ADH and now I have to wait. Is this right? Should I have insisted on not waiting 2 months? It could be just nothing but it's all so coincidental. Hmmm...

I'm sorry for your loss April. Stay strong

Dx 3/22/2018, Right Surgery 4/10/2018
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May 1, 2018 11:09PM rahulone347 wrote:

Thanks for reply

cancer insurance
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May 5, 2018 03:37PM Robinda2970 wrote:

Anyone have multiple areas of adh in same breast?? Did you just leave and do surveillance or mastectomy?

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/2/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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May 7, 2018 07:06PM Golfnut33 wrote:

hi robinda - I have multiple areas and am due to have a lumpectomy where they will take quite a large area to remove all. Leaving is not an option according to my BS

Dx 4/2018, LCIS/DCIS, Right, 6cm+, Stage 0, Grade 3
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May 8, 2018 06:03AM Robinda2970 wrote:

thank you!! Unfortunately I have too much to do lumpectomy.

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/2/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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May 9, 2018 01:52PM teachermomfl wrote:

ADH friends, I have a question & I think this is the best place to post it. As some of you know, I was diagnosed with ADH in my left breast in December after a stereotactic biopsy, and it was removed during an excisional biopsy. Started Tamoxifen in March, and next mammo and appointment with breast surgeon is in August. This morning in the shower, I felt a new palpable lump in my right breast. It's at about the 12 o'clock spot, a few inches above the nipple. I have very fibrocystic breasts, so I assume it's a cyst. Do you recommend calling my breast surgeon since it's new and palpable? I hate the thought of more appointments for something that may just be a cyst. What do y'all think?

Diagnosis: ADH-12/26/17
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May 10, 2018 06:03AM momto3sons wrote:

If it were me, I'd keep an eye on it for at least the next month. If it's still there in mid-June, then I'd contact your BS to see if they think you should come in before August.

I've noticed a couple of new spots, but it's hard to tell if it's something caused by my biopsy in February...everything feels so different on that side now.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/21/2018 Lumpectomy: Right
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May 10, 2018 01:09PM teachermomfl wrote:

Thanks, momto2sons. I'll keep an eye on it. This is actually in the other breast, but I had an ultrasound in November and an MRI in January, so I'm sure it's just a cyst. I don't think anything major would show up in that short of time period. Thanks for the reply. How have you been feeling?

Diagnosis: ADH-12/26/17
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May 10, 2018 02:05PM momto3sons wrote:

Glad you noticed it, though!

I'm doing pretty good - although the nerves are still kind of out of whack since the biopsy...still numb in some areas. At least now it's not the first thing I think of every day :)

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/21/2018 Lumpectomy: Right
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May 14, 2018 01:00PM cgs wrote:

I just got my path report (and phone call from dr) with my biopsy results. I had a needle biopsy in March that showed adh. Then surgical biopsy last week. The doctor said it's all benign and they lab results show flat epithelal atypia. Here's what it says under "interpretation":

A. RIGHT BREAST, UPPER OUTER QUADRANT, LUMPECTOMY WITH WIRE (ASP-18-1802)
- FLAT EPITHELIAL ATYPIA
- USUAL DUCTAL HYPERPLASIA
- APOCRINE METAPLASIA
- MICROCALCIFICATIONS ASSOCIATED WITH FIBROCYSTIC CHANGES
- BIOPSY SITE CHANGES


Here's what it says on the bottom under "clinical info for interpretation":

PREOP DIAGNOSIS: RIGHT BREAST ATYPICAL DUCTAL HYPERPLASIA
POSTOP DIAGNOSIS: SAME


From what I'm googling and reading. FEA is not the same as ADH, but the bottom of the report makes it sound like it's the same thing. So I'm confused. Is FEA a subset of ADH?


I have a post-surgical followup Friday and will try to ask more about it, but thought folks here might be able to explain and help me know what to ask.

And post-surgery, my already small breast is now half the size of the other one, which maybe isn't a big deal when they're so small to start, but I basically have a "pec"/man boob (though when people talk about man boobs, they're talking about something that is larger than what I have) on the right and my regular small breast on the left, and I'm not thrilled. I'm wearing a regular bra today, and it's not as bad as when I was wearing a yoga bra, but I'm not sure how bathing suits are going to be. Or anything fitted. I'm happy if that's my biggest problem though. Perspective.

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May 17, 2018 06:37AM westb2 wrote:

Hi! I am dealing with very little compared to most of you but I wanted your opinions. Diagnosed with ADH after needle biopsy on March of this year.

Brief history:

3/25/15 - stereotactic guided core biopsy of clustered calcifications in rt breast. DIAG: fibrocystic changes with microcysts. Negative for malignancy.

Had mammograms every 6 months after this until 9/16/16 when the micro calcificatins changed

10/11/16 - excision surgery, rt breast. DIAG: Fibrocystic changes with microcysts and micro calcification, negative for atypia or malignancy.

My annual mammogram is in March. At next mammogram (3/2/17), there were grouped calcifications in same area. Suggested mammogram on that side every 6 months.

3/7/18 - calcifications changed (increased and varying sizes, some round)

3/13/18 - another stereotactic guided core biopsy. DIAG: ADH

5/1/18 - excision surgery, rt breast, same area as all other issues. DIAG: Columnar changes, focal usual ductal hyperplasia and calcifications. Biopsy changes noted. Negative for atypia or malignancy.


I know this is good news! I was wondering what the normal protocol if after this. My surgeon said the radiologist would let me know when next mammogram would be needed. I called the radiologist office and spoke to the nurse navigator. She pulled up the reports and said that unless I get a letter from them saying to go every 6 months, just go to next annual (which would not be until March 2019). She said there might not be anything they are worried about or watching. From reading these posts and from what I found on-line, I expected to at least have a mammogram on that side every 6 months. I do know it was just a very small area of ADH as the core biopsy got all of the cells. I am just worried about not having a mammogram until March. Thanks you all in advance for your thoughts on this.

DX ADH 3/13/18. Surgery 5/1/2018 Lumpectomy: Right
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May 17, 2018 06:48AM momoschki wrote:

There seems to be a pretty wide variance in screening protocols for ADH, from what I’ve observed here. I was dx’ed 7 years ago - like you, all my ADH was removed by the stereotactic biopsy. I am screened every six months: mammo in the fall and alternating MRI and ultrasound in the spring, after which I have a follow up appt with my BS. I’ve also been taking Evista for the past 3.5 years. Have you had a consult with an oncologist? Do you know what your estimated risk is

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
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May 17, 2018 08:44AM Nash5 wrote:

I would talk to your BS and have them recommend an oncologist. The oncologist will take you through your options on medication and risks. It is a very informative meeting ...well mine was...so a recommendation of an great oncologist with good bedside manner is important. I am still deciding whether I am going to take the Tamoxifen. My oncologist appt was just a couple of weeks ago. My BS suggested I do my 3D mammogram and my regular on same day so that they can be read at the same time so I will not be doing a mammogram every 6 months. Hope my info helped but most importantly do what you are comfortable with. It’s your body


Dx 3/22/2018, Right Surgery 4/10/2018
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May 17, 2018 09:46AM westb2 wrote:

Thank you both. I asked my surgeon about seeing an oncologist when I met him before my surgery. He said if I felt better, we could set up a consult with an oncologist but said to wait until after surgery. Now, since my results were benign, he doesn't seem to be worried. He said nothing about an oncologist. He said the best thing to do is self-exams and regular mammograms. I asked if I would then get one in 6 months, he said the radiologist would let me know. I don't have any family history of BC. I did take the pill for 20+ years and did not have children. Should I try to talk to my gynecologist or PCP or just set up a consult with an oncologist? I have the names good local ones. I had a stroke in 2011 so I don't think I would be able to take the medicines. My neurologist and my gynecologist both said no more hormones for me after my stroke.

DX ADH 3/13/18. Surgery 5/1/2018 Lumpectomy: Right
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May 17, 2018 01:09PM Nash5 wrote:

When i was diagnosed with ADH I was told to see an oncologist right after surgery. The meeting was for me to understand my risks and to possibly go on meds that would decrease my chances that the atypia would return. If your BS knows your history( that you cannot be treated with any meds) that might be why he is not sending you to an oncologist. Maybe send your doctor a message and find out why. Every case is different. I had a wire exisional biopsy and my dr removed a lot of breast tissue so my case is different. I am now actually dealing with the fact that the large amount of breast tissue that was removed has made my right breast much smaller than my left. I know things could be worse and I am greatful that they are not, but I was just hoping my appearance would not change. All we can do is keep asking questions. Like i said before its your body!

Dx 3/22/2018, Right Surgery 4/10/2018
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May 17, 2018 03:00PM - edited May 17, 2018 05:12PM by momoschki

West, as I said before, like you, all my ADH was removed during the needle biopsy- nothing further of note in the excisional biopsy. I am still considered high risk, however, as ADH is a marker for increased BC risk going forward- even with the very small amount I (and you) had. I would imagine that you are eligible for MRIs as an additional screening method. In any case, I would not be comfortable with just annual mammograms. I take some comfort in being closely watched. I second the suggestion to seek out an oncologist, as he/she should be able to add some clarity to your own personal situation

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
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May 17, 2018 04:21PM - edited May 18, 2018 09:06AM by westb2

Thank you all for replying to me. I wish to best to you all

DX ADH 3/13/18. Surgery 5/1/2018 Lumpectomy: Right
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May 18, 2018 12:43PM cgs wrote:

I could have written some of these posts. westb2, I had my first diagnosis of adh back in 2011. After excisional biopsy, my breast surgeon suggested seeing an oncologist, which I did, and I declined medication. I think I had mammos every 6 months for 2 years, then back to annual, but I'm not sure.

Then in 2016 I had another area of concern (microcalcs), but this time a needle biopsy was clear. I was again sent for mammos every 6 months for 2 years to keep an eye on the area.

At the last one of these every-6-month mammos, they found 2 areas of microcalcs that had changed. I had them both needle biopsied and one showed adh. Had surgery last week and just saw my bs for a followup. Different surgeon than the first time. She said to get a mammo in 6 months because the *other* microcalc is still there. If nothing has changed, then I'll go back to annual. But the microcalc that had adh is gone, so if it were just that, I wouldn't have to go in 6 months. So that may be where your bs is coming from. That was my understanding anyway. And she writes my mammo orders, not the radiologist. She decides the course of action. I was under her care (she is a breast specialist) before this round of adh was found. She has not sent me to an oncologist.

nash, I'm in the same boat. Right boob is now a good bit smaller than the left. I got the names of some plastic surgeons today from y bs. I don't know if I'll do anything, but I will explore my options. I don't know if insurance covers post-lumpectomy "reconstruction" or just post-mastectomy.

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May 19, 2018 07:25AM - edited May 19, 2018 07:30AM by westb2

Thanks cgs! That may be why, they got the microcalcs and ADH. My report says there are still calcs but doesn't say if they are micro or not. I think that after my first surgery, my surgeon is the one who said get mamm in 6 months. He wrote the orders for the first 6 month check and then my gynecologist did after that. But they found microcalcs in that first follow up, if that makes sense. My sister-in-law's fiancé is a prominent gynecologist in the Baltimore area (I live near Pittsburgh). I sent him my reports and he is going to review them for me. There is also a women's hospital in Pgh through UPMC that I may go visit. I feel for you girls with larger boobs. Mine are very small. Other that the scar, my rt boob actually looks better (a little bit smaller) that my left. Kind of like a mini lift, ha ha.

DX ADH 3/13/18. Surgery 5/1/2018 Lumpectomy: Right
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May 21, 2018 02:06PM westb2 wrote:

I made an appt for 7/5 with Dr. Donald Keenan, breast specialist, Univ. of Pittsburgh Magee Women’s Hospital. He has a lot of experience and is very up-to-date with new treatments, etc. I am very happy. Thanks again to everyone who help answer my questions!

DX ADH 3/13/18. Surgery 5/1/2018 Lumpectomy: Right
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May 21, 2018 05:10PM Robinda2970 wrote:

Anyone know what the increase in chances of developing invasive cancer are if you have adh? I think I read 30%?

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/2/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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May 23, 2018 06:58AM uneedaklu wrote:

Hey, y'all -

Newest member of the ADH club here.

The synopsis: questionable mammo in Nov 2017 with f/u US showing small lesion. Watch and follow-up US in 6 months, which happened at the end of April. Lesion doubled in size, so off I go to stereotactic biopsy, except he can't visualize it, so he does US-guided instead. Pathology shows papilloma with atypia and microcalcifications. Because of that, I'm scheduled for lumpectomy which happened last Thursday, 5/17/18.

I'm very happy to say that the pathology from the lumpectomy shows ADH, the same as the biopsy, so there's nothing hiding. I have a follow-up with an MO since the ADH moves me into the high-risk club, and I need to complete my genetic testing, but my 6-month follow-up is already scheduled, and he's hoping not to need to see me before then. Phew.

Still trying to process that this was the best possible result. I feel like this last month has moved me into PTSD territory. And I gotta be honest - I'm not 100% convinced that this is over yet. I feel like the idea of riding this roller coaster every 6 months for the next however many years might just put me over the edge. There's a part of me that wants to say "Just take them away and be done with it" to take back some level of control. Does anyone else ever feel like that?

ADH dx 5/2018
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May 23, 2018 02:27PM cgs wrote:

Robin, I think you may be right. I found this:

On analyzing the women's absolute risk of breast cancer from the time of biopsy, they found that it increased by more than 1% each year; 7% of women had developed the disease after 5 years, 13% had developed it after 10 years, while 30% developed breast cancer 25 years after biopsy.

https://www.medicalnewstoday.com/articles/287536.p...

I'm 7 years past my first adh diagnosis.

uneedaklu, yes, it's scary. But for me, I just really make a decision not to worry until I need to worry. It doesn't always work, but it mostly does. I first had adh in 2011. Then another concerning mammo followed by needle biopsy in 2016. That was one was negative.

Then another concerning mammo in March 2018. I was in tears thinking about yet another needle biopsy just 2 years after the last one. But I calmed down and awaited results. Adh again, so surgery. Again. I was actually not worried about the surgery, except getting the IV, which can be hard on me. And the area was small, so I wasn't expecting cancer. I've had 2 surgeries now and both times it was easier to recover from than the needle biopsy. But yes, after the most recent mammo, I was ready to hack that breast off. Then I started reading about mastectomies and the decision to live flat or get reconstruction and decided that that all sounded really complicated and I wanted to keep my breast. Even though it's small, they were able to remove the adh and keep the breast. I may look into plastic surgery, because now it's smaller than the other by a good bit, but the point is, yes, I feel that way sometimes.

I have a follow up mammo in September because there were 3 areas of microcalcs, 2 had changed so they biopsied the 2, and one was adh, which they removed. So there are still 2 areas of microcalcs that need to be followed. If that mammo is ok, I think I go back to yearly screening. If it's not ok and they want another needle biopsy, I may just lose it at that point and tell them to go straight to surgery and take it off. Of course, I'm guessing insurance won't cover that and I'd have to get the needle biopsy first. In any case, I'm just not worrying about it until I get results. I'll go for my mammo in September and see what happens. I'll see my breast doctor in Oct for next steps.

Hang in there. This is new for you. People handle it and process it in different ways and freaking out a little is totally normal.

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May 24, 2018 11:05AM momoschki wrote:

One thing that has never been clear to me is why, if our risk climbs with time, some doctors are inclined to make screenings less frequent as time passes. This has not been true in my case (like you, cgs, my ADH dx was in 2011), but in some cases after a couple of years of 6 month screenings, if clear, the schedule reverts to annual checks. My own doctor has alluded to this possibility as an option for the future as much as I would love to avoid the anxiety of 6 month checks, I do take some comfort in being watched closely.

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left

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