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Topic: Member of the "6 Month Watchful Waiting Club", Unite!

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

Posted on: Jun 2, 2011 11:33PM - edited Jun 2, 2011 11:34PM by SarahsMom

SarahsMom wrote:

Oops, meant to say "Members" in the title - guess I need more coffee!

Hi ladies, just wanted to start a thread to pull together thoughts from many boards on this subject.  I've been in the 6 month club for 5 years now.  Like someone else out here recently said - if I don't have cancer now, I surely will get it from all of the diagnostics!  One ductal excision, focal asymmetry, increasing density and calcs. Always takes weeks to sort through the findings, then "see you in 6 months", which, by that time, is really 4 months. The roller coaster never ends. 45 years old, high risk due to family and other factors, thinking about Tamoxifen, a proactive mastectomy...not sure.

It is helpful sharing the journey with all of you wonderful ladies! 

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Apr 17, 2018 01:52AM momoschki wrote:

update: thrilled and relieved to report a clean ultrasound. Now it’s can breathe again for the next 6 months. Unbelievable tension has lifted, but I am exhausted! Djabi, how did you make out today

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Apr 17, 2018 02:21AM Djabi53 wrote:

thanks dear friends for helping me pass the time the last few days before my appt. appt is over - all is well. I still have many things they are watching but no changes. I woke up literally shaking like a leaf and took another Xanax as I walked out the door. I arrived obviously on some kind of sedative. The technician was great when I told her I took Xanax last night and this morning. She said that was fine. She told me to let her know if I felt like I was going to collapse while she took the images. She could go slow and let me take breaks sitting in a chair if i felt weak. And she put a chair behind me in case I was going to fall. She said some women have collapsed and fallen on the floor. Hope everyone else will check in about their appts today

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Apr 17, 2018 02:27AM Djabi53 wrote:

momoschki - great news - I’m so happy for you! Yes I am exhausted too but so relieved

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Apr 17, 2018 05:05AM - edited Apr 17, 2018 10:30PM by momoschki

Thanks- I know well what you mean by that sedated feeling. I took a klonopin last night and another the morning before I left. Felt pretty loopy, but that’s better than the alternative. Afterwards I took myself on a little shopping expedition and now I think a nap my be in order...

Congrats, Djabi on a good outcome as well. Whew! Onward until October.

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Apr 19, 2018 01:45AM Tinkerbell49 wrote:

Thats great news momo and Franki so glad we all got this over with. Now its life as usual until Sept and Oct. Then the rollercoaster ride begins again.SillyHeart

Dx: ADH 9/15 Surgery Lumpectomy: Left
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Apr 19, 2018 05:28AM - edited Apr 19, 2018 05:28AM by momoschki

Thank you, Tinkerbell- yes, we get a 6 month respite. It goes so fast! But at least now I feel like I can look forward to the summer

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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May 23, 2018 10:19PM momallthetime wrote:

Ginger 16 regarding the papilloma, i had that and Radiologist and BS told me it should be removed, one of the reasons is the worry that something could be hiding under the papilloma so that's for sure why they are cautious to excise it. I had the excision, the pathology actually came back with MORE stuff to watch, like proliferative ALH...just went for BS appointment (was suppose to be 6 mos, but i only was able to go now), and will go to get images in 2-3 months.

This is one of the sites that explain this and all other details of the breast, it's easy to follow.


Also if i may, if 2 other doctors said to take it out, what made you go to the one that said to just watch it? It's definitely done, a lot of ladies watch it, but there is that gnawing in the back of your head, just saying. Nothing is fool proof.

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Jun 7, 2018 11:06AM Bhmomma wrote:

Had a baseline MRI in Feb, benign, and mammo this week, and my six month follow up, all good! Now I can relax over the summer. Next round of testing, clinical exams scheduled for Jan 2019.

ALH, radial scar Hormonal Therapy 11/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 20, 2018 02:35AM NicolaSue wrote:

We might have to rename this the 12 month waiting list!! I'm in the UK and it seems that many hospitals here have us on 12 months rather than 6 month recall. I think I'd prefer to be seen more frequently but with our publicly funded health system you don't get that choice.

LCIS diagnosed Spring 2017. Vacuum excision biopsy. First follow up mammo 2018 - clear
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Oct 14, 2018 02:48PM SarahsMom wrote:

Hi Ladies, I'm back. I started this forum in 2010 and so pleased it's been a source of support and information to so many other high risk ladies!

My risk was reassessed due to some new breast cancer cases in my family, so now it is 33%. I've been having 3D mammo, ultrasound and regular mammo spread out throughout he year.

A few weeks ago, my insurance approved an MRI with contrast. Here are the results -

MRI BI-RADS: 3 Probably benign

* Most worrisome ---> There is a 0.4 cm focus of enhancement in the right breast at 9 o'clock posterior depth. This shows homogeneous enhancement and persistent delayed kinetics. This is probably benign; however, a 6 month MRI follow-up is recommended.

* (Sounds like tissue) ---> Area of 2 cm non-mass enhancement in the right central breast middle depth with progressive enhancement is most likely benign fibroglandular tissue.

* (These are just regular cysts) There are multiple T2 hyperintense /T1 hypointense non-enhancing masses in the right breast, which are most compatible with multiple simple cysts. The two largest cyst in the lower outer breast measure approximally 1.4 cm x 0.8 cm for the posterior cyst, and and 1.2 cm x 0.8 cm for the more anterior cyst. Additional 0.8 cm -1.2 cm cysts are seen in the right breast 9-10 o'clock posterior depth.

Thanks for any comments or insight on that focus of enhancement. I suppose at the next MRI if the focus is larger, then maybe we would do a biopsy?

Hugs to all of you!!

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Oct 17, 2018 01:04AM uneedaklu wrote:

Hey, y'all -

My turn to join. Yearly mammo in Nov 2017 with ultrasound; first round of watchful waiting with follow-up in April 2018. Follow-up showed small are of uncertainty, so we biopsied and ultimately found ADH, which led to a lumpectomy. That bumped me into the high risk club, and forced me to stop the HRT that was keeping me sane, and also got me a free trip to Aromasin-land, which I started about a month ago with (thankfully) manageable side effects.

I'm approaching my first post-lumpectomy mammo and US, scheduled for 11/7. I've been having some discomfort in the other breast that's gotten somewhat worse over the past few months, and last night I did a particularly thorough BSE and found what I believe is something that wasn't there before. The BS can't see me sooner, anyway, so there's no point in moving the diagnostics up, but I'm not thrilled about spending the next 3 weeks in high anxiety land. Scared

Fingers crossed that it's just a reaction to the AI, which really doesn't make any sense, but that's all I got to keep me going right now ...

ADH dx 5/2018
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Oct 21, 2018 07:12AM Anton0277 wrote:

I got a Bi-Rads 3 diagnosis yesterday. Another round of imaging in 6 months. In two years, if everything goes ok, I’ll definitely have PTSD. The worst part is that I feel that my mammograms have gotten increasingly worse and that I’m really looking at a precancerous situation on one breast, only they don’t want to tell me. This is no way to live.

I really really hope women in the future have access to better diagnostic tools and better treatment.

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Oct 21, 2018 07:42AM MelissaDallas wrote:

What were your precancerous biopsy results

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 21, 2018 08:00AM - edited Mar 16, 2019 09:08AM by Anton0277

I haven't had a biopsy. What I meant was, I feel like the condition of my left breast is worsening. “Changes" are always observed on this breast at mammogram. Maybe biopsying the “possible intramammary lymph node" or getting a breast MRI is the way to go.

On top of that, I have an orange-sized ovarian cyst that needs removal and could also be malignant. I'm dealing with other conditions as well. I was informed that I may be pre-diabetic and may be at risk for major heart disease.

Compared to what many of the very brave women on this site are going through, all of this may not be that much, but I am tired of the uncertainty. From now on I will ask for a Xanax prescription while testing and waiting.

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Oct 25, 2018 03:04AM cattledoglv wrote:

it's almost time for my six month too. Long story short, in 2017 I found a lump sitting right on top of my implant below my right nipple. I had cosmetic implants in 2009 and had no issues ever with my breasts until then. Dr sent me for a mammo. They couldn't see it on mammo. Apparently, I have extremely dense breasts. I was 39 at the time. Went in for US. Sure enough, mass that is similar to fibroadenoma but not totally like one dr said. He wanted to do a bx which showed a fibroadenoma. It measured 2.4 cm. I decided on removal because the lump was painful and I had shooting pains where it was. I've also had right sided chest pain ever since since said mass was growing. I had the lump removed and the path said focal ADH within fibroadenoma 2mm. My dr was shocked. I've since read that any focal ADH larger than 3mm is considered DCIS since they are so similar in apprearence and it's basically size and quantity of cells that determine ADH. Of course so many studies contradict each other so who really knows. Anywho, due to the mammos I had, I got a ruptured implant on the left side. I had huge nodes on the left in my yearly screening mammo this year in March from silicone traveling in my lymph system. Due to this I had to have an MRI. I have three nodes that are 3cm+ From silicone and several areas my dr wants to watch due to asymmetry on the left. Because of this I had my implants taken out so mammos can be done easier for me and breast checks are easier and the one was ruptured. I also had a reduction. I was still having chest pain and pain on both sides that I thought would go away after the weight of the implants was gone. I was a 36G and I'm a 34B now after the surgery. Ive also lost 27lbs so I know I'll be even more dense than before since they've since shrunk after the surgery from weight loss. The path from the reduction indicated that I also had ADH in the left breast, a 2mm focus. I'm due for my 6mo MRI on Nov 9. I've been going back and forth on having the nodes removed. I know it is a very painful surgery and can have lasting effects. I'm tired of feeling like there's a lime in my armpit and it makes my arm ache, fingers tingle, and axilla painful sometimes. I still have pain in my chest under my right breast and right axilla area. I've had a chest CT and it shows nothing amiss. Also, my breast MRI in March showed a 3mm sternal hemangioma. I guess this is extremely rare to have on your sternum and should not be the cause of my pain. It's all so weird and stressful. Wish I knew why I'm still having chest and breast pain. Sometimes you almost wish they'd find something to explain it so at least you know. You know? Anyone else have bilateral ADH? I really don't want to take hormone therapy because I've worked so hard at losing weight and I already have arthritis. Ugh 😑

ADH Rt 8/17 ADH Left 5/18 Surgery 8/25/2017 Lumpectomy: Right Surgery 5/18/2018 Lumpectomy Surgery 12/26/2018 Lymph node removal: Left, Underarm/Axillary
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Nov 13, 2018 03:08AM uneedaklu wrote:

"I've since read that any focal ADH larger than 3mm is considered DCIS since they are so similar in apprearence and it's basically size and quantity of cells that determine ADH."

This is concerning to me because my ADH was substantially larger than that. Can you point me to where you found that reference?

I actually have a follow up with my BS this afternoon because I had my 6-month follow-up which they classifed as BIRADS 2, but I have a palpable lump that both I and the US tech can feel, so I have a feeling I'm going to be sent for MRI.

ADH dx 5/2018
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Nov 13, 2018 07:26AM teachermomfl wrote:

Hi ladies! It's been a while since I've posted on any of these boards. Been getting regular mammos since I was 35 due to very dense breasts and history of cysts. Last December, I was called for a biopsy due to some suspicious looking calcs, turned out to be ADH. Had excisional biopsy to make sure nothing more sinister was lurking, and diagnosis stayed at ADH. Had my six month mammo & ultrasound in August (pretty clear, just some cysts & one hypoechoic area they want to watch), and my next mammo, US & MRI are scheduled for mid February. The past few days I've had very sharp pain right below my right nipple. When I lift my breast, I can feel a lump where the source of the pain is. Anywhoo...I know breast cancer doesn't typically hurt, AND I just had US and Mammo in August. Do y'all think it's ok to wait until my next set of tests in February? I don't want my breast surgeon to think I'm a wackadoo. I am meeting with my oncologist Monday (I'm on Tamoxifen due to high risk), and I can mention it to her if it's still causing pain.

Diagnosis: ADH-12/26/17
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Nov 13, 2018 10:36AM cattledoglv wrote:

I’ll try to find the page I saw that on. No idea where I saw it now lol. Is it possible it was a focal area of ADH within other weird stuff? Sometimes the wording the Drs use leave a lot to be desired.

ADH Rt 8/17 ADH Left 5/18 Surgery 8/25/2017 Lumpectomy: Right Surgery 5/18/2018 Lumpectomy Surgery 12/26/2018 Lymph node removal: Left, Underarm/Axillary
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Nov 13, 2018 10:39AM cattledoglv wrote:

I would 100% mention it to a dr ASAP. Breast cancer CAN hurt! It is a myth that it doesn’t hurt. There are hundreds of women on this page that had painful lumps that were BC. That being said, that doesn’t mean you have BC, but it’s always best to get checked for piece of mind and your health. Good luck!

ADH Rt 8/17 ADH Left 5/18 Surgery 8/25/2017 Lumpectomy: Right Surgery 5/18/2018 Lumpectomy Surgery 12/26/2018 Lymph node removal: Left, Underarm/Axillary
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Nov 14, 2018 01:03AM cattledoglv wrote:

here is one link. It’s possible I am interpreting it incorrectly, however, it’s does seem like ADH dx is used for small focal lesions or multi centric lesions.


ADH Rt 8/17 ADH Left 5/18 Surgery 8/25/2017 Lumpectomy: Right Surgery 5/18/2018 Lumpectomy Surgery 12/26/2018 Lymph node removal: Left, Underarm/Axillary
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Nov 29, 2018 05:11AM Buddyrock wrote:


I also received a Birads 3 diagnosis, mine on 11/21. I am finding the idea of waiting 6 months very difficult.

I went in for a diag mammogram & u/s of right breast b/c of asymmetry on my screening mamm.

The asymmetry was given all clear but u/s had an incidental finding on the other side of my right breast: Ultrasound:

Targeted right breast ultrasound of the inferior half for the mammographically detected finding was performed. No suspicious solid or cystic masses are identified. No sonographic correlate for the
asymmetry seen in the inferior right breast. Incidentally identified at 8:00, 6 cm from the nipple is an oval, circumscribed, hypoechoic mass with no internal vascularity and parallel orientation measuring 0.3 x 0.2 x 0.3 cm. This is a probably benign mass. Birads 3 back in 6 months "Probably" benign

My gyn says she doesn't see anything alarming in the radiologist report and is comfortable waiting. I am NOT comfortable :)

I've scheduled a consult at the Breast Center and was assigned an internist to discuss my concerns on 12/19.

Fingers crossed to everyone!

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Dec 14, 2018 10:30AM Nanibob wrote:

Hi, just found this forum. I feel your pain I was also diagnosed with left breast asymmetry. I was lucky enough that the plac I go to have my mammogram gives you the option off waiting around for 30 minutes for the results and if radiologist wants additional pictures and ultrasound they put in the order. I waited around and of course I need additional pictures and ultrasound. After all I need to go back in 6 months follow up ☹️ Family history off breastbone cancer mom and sister. This is very stressful. Lord help me

Comparison is made to exams dated: 12/12/2018, 6/2/2017 NYU Langone Center For Women's Imaging, 3/31/2015, 3/24/2014, and 3/8/2013.
Tomosynthesis and 2D imaging of the breast(s) were performed.
The tissue of the left breast is heterogeneously dense. This may lower the sensitivity of mammography.
There is an asymmetry in the left breast posterior depth medial region seen on the craniocaudal view only. This is less prominent on spot compression views and not definitely seen on lateral or MLO views. A possible cyst is seen in this region on February 2018 MRI (series 4 image 20). There is no definite sonographic correlate on today's ultrasound.
No other significant masses or calcifications are seen in the breast.
Current study was also evaluated with a computer aided detection (CAD) system.

The asymmetry in the left breast is probably benign and may correlate to a benign MRI finding as above.
A follow-up left mammogram in 6 months is recommended to demonstrate stability.
Please note 6 month follow-up right breast ultrasound was also recommended on same day screening ultrasound. See separate report.

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Dec 14, 2018 02:20PM Moderators wrote:

Hi Nanibob! Welcome to our community. We're so sorry that you're stuck in the waiting game, we know how frustrating and stressful it can be! We are all here for you when you want to vent or need support.

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Dec 15, 2018 02:18AM momto3sons wrote:

Nanibob - that's always good to see "probably benign", but I know it still causes worry.

I'm finally scheduled for my first full mammogram since dealing with a scare earlier this year. I'm totally calm about it, which is a much better place than I was in back in January and February. This will be a 3D diagnostic mammo, possibly followed by an ultrasound if needed.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Dec 27, 2018 11:06AM momto3sons wrote:

I had my mammogram last week, and got the all clear for now. I have more cysts than I did previously, but no distortion this go around. I have my appointment with the BS in April, and I'm supposed to have an MRI in June. We'll see if they still want to go that route since I got a BIRAD 2 score.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Jan 27, 2019 11:44PM Larlaw wrote:

Looks like a club that I'm in and didn't know! I'm considered low risk (no family history) but was sent for my first mammogram in Nov 2017 as I had just turned 40. They found an area of asymmetry in my left breast and I was called back for a diagnostic mammogram followed by an ultrasound the same day. I was asked at the ultrasound if I had any injuries to that breast (I had a bug bruise on it a few months prior) as it looked like scar tissue. The lump is pretty much right behind my nipple and 2 cm. It looked like a capsule to me on the ultrasound. There was some pulling in (I still don't see it) so the radiologist wanted to be sure. I was sent for an MRI with contrast and it didn't light up in the slightest. Two radiologists looked at it and said it was scar tissue and to come back in 6 months for a mammogram and another MRI.

Had the followup mammogram in May 2018 although it was deemed I didn't like the MRI after all (I assume by another radiologist).

I was supposed to have my year checkup in mid'/late Nov 2018 but they called me that one of the machines was down at the time and I was rescheduled to early January. I got a callback from that mammogram for an ultrasound so of course I'm freaking out. My dr told me when she called that its the same spot and they want to look at it from a different angle - whatever that means. I've been given no indication that it appears to have gotten bigger or changed. My dr did an exam while I was in for an inrelated thing and said not to worry about it. Also that she may recommend I get it removed for my own peace of mind.

Man waiting sucks.

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Mar 14, 2019 01:24PM LoveLau wrote:

what medication are you on?.

I have been on many. My brothers and sisters all say I am not getting better cause I am not taking the meds on time. I am currently on anafranil and latromine. The dr says I have ocd.

Last month I had a test on how the meds could work on me. They said i am a low metabolizer. So they sent my blood to Philadelphia to figure ot if it is staying in my system too long.

I wish I could get my life back. Today I sent a contract to one of my old time clients. Thar was good.i hope I can continue making progress. BLESS ALL OF YOU.

Dx 10/2016, LCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 1/24 nodes, ER+/PR-, HER2-
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Apr 9, 2019 08:31AM stephstumbo wrote:

Hi! I too am 45 years old. I have just been given a positive diagnosis for the BRCA1 gene mutation. My aunt went through breast cancer and a double mastectomy and hysterectomy. She has the same gene mutation. Her daughter, my cousin has ovarian cancer. She’s in her early 30s. She too has the same mutation. So...I’ve been thrown into making some decisions for my future. So far, I have decided to hav an oophrectomy. That will be in May. However, I’ve not totally decided on the mastectomy, although I’m leaning that way. I don’t really feel like I want to go through the “every 6 months” surveillance and also take Tamoxifen. I think I would feel like a ticking time bomb. If anyone has any advice for me, I’m open to it.

Good luck to all

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Apr 9, 2019 11:03AM Moderators wrote:

Welcome, Stephstumbo! We're glad you've joined our community, and hope you find this to be a supportive space. We know what a difficult and personal decision prophylactic surgery is, and everyone will make their decision based on what works best for them. Not wanting to keep up with the surveillance is definitely something that many people take into consideration! We wish you the best on your upcoming surgery, and hope the information you find here is helpful for making a decision about further surgeries.

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Apr 10, 2019 06:15AM momto3sons wrote:

I met with a new breast surgeon yesterday, and I really like her. I wanted to switch over to one with Northwestern Medicine, and she came very highly recommended.

She had reviewed my images from December, and said I have very "busy" breasts :)...that's one way to put it. She said they felt very lumpy as well, but nothing felt suspicious. She's put in the orders for my MRI in June, but it won't run for authorization until I call next month to schedule it. Then I'll meet with the PA with the high risk clinic to go over those results. After that it'll pretty much lather, rinse, repeat until I get a few years out without new biopsies or concerns.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right

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