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Topic: Concerned and needing tips to help with the waiting game!

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

Posted on: Jun 2, 2019 04:20PM - edited Jun 2, 2019 04:21PM by CGLion

CGLion wrote:


I came here last week and reading others stories helped, but now I find myself in an extended waiting game and am stressing too much!  I have a family history of breast cancer on my mothers side.  My grandmother died from breast cancer when she was 41 or 42 years old.  She had 5 daughters including my mother and two of them have died of breast cancer at around the age of 60.  I don't know my mothers cancer status for sure because she has severe mental health issues.  She has stated she had breast cancer several times but there is no evidence of her receiving any treatment for that diagnosis.  Though I don't have a confirmed first degree relative with a bc diagnosis, I have been deemed high risk by my doctor based off the high percentage (50%) of second degree relatives who have been diagnosed.

I am currently 36 years old.  3 years ago I had an unexplained raise in my prolactin levels and odd breast changes.  Due to this and my family history I was sent for a diagnostic mammogram and possible ultrasound, in addition to an MRI of my head to rule out a pituitary tumor.  The ultrasound found I had an enlarged duct in my right breast, but no sign of anything they were concerned about.  My hormone levels suddenly went back to normal and there was no further testing.  

About 2 months ago I started getting spontaneous sticky discharge from one duct on my right breast.  I didn't go in right away thinking it might just go away like it had 3 years ago.  In the last month the discharge stayed sticky but turned dark brownish and I started to get pain in my right breast.  I went to the doctor and they confirmed the discharge contained blood.  She also felt a lump in my right breast near my chest wall, closer to my armpit.  I was sent for another diagnostic mammogram and ultrasound.  They did not find the lump the doctor felt or any signs of what is causing the bloody discharge. My doctor consulted with a breast specialist (oncology breast surgeon) who said it could be a papilloma and requested to see me.  I have been referred, but a week later I am still waiting for the phone call to make the appointment. I have since laid in bed and can feel the lump my doctor felt that I had previously missed during my own (somewhat lacking) self-exams.  

I am concerned and wondering if the mammogram or ultrasound could have missed the lump.  If they had seen it and not been worried about it I would feel better, but they didn't find it.  So now I am wondering what it could be.  Has anyone else ever had a lump be missed through this testing, or am I over thinking it?  I am also worried about what the testing/treatment will be for the affected duct.  I know I'm in for a bit of a wait before I get any answers but I'm hopeful coming here and talking to all of you will help me pass the time and help reduce my stress levels.  

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Jun 2, 2019 05:41PM MelissaDallas wrote:

Do you have copies of your mammogram and ultrasound reports? Could be that whatever you are feeling is noted in the report but appeared clearly benign

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jun 2, 2019 06:55PM CGLion wrote:

I don't have the copies but the radiologist had the technician come in immediately after the test and tell me they did not see any lump on the imaging.  I clarified by asking if they had seen something they were not concerned with or if they had not seen anything at all.  She confirmed they had not seen anything, period.  I had not yet felt the lump my doctor had located so I could not point out exactly where it was.  They did the ultrasound based on the written description of the location from my doctor.  Now that I've felt the lump it makes me wonder if they missed it.

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Jun 4, 2019 05:13PM vlnrph wrote:

I had a small tumor in the upper outer quadrant that did not show up on mammogram and could not be felt. It was found by MRI when the lobular lesion was being assessed prior to surgery. I think it may be difficult to get a good look at all areas of the chest wall so be sure to ask about more sensitive imaging when you get your appointment.

Since it’s been over a week, perhaps the specialist’s office lost the referral. Call them!

Years prior to my BC diagnoses, I had dilated ducts that probably resulted from a mastitis infection while trying to nurse a premie. The attempt to inject dye through the nipple opening failed which then led to a biopsy that was benign. There was never any discharge. Hopefully you will get some answers regarding your situation soon...

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jun 5, 2019 02:49AM CGLion wrote:

vlnrph, thank you so much for your reply!  I have to say reading a lot of the posts here has made me more confident to be more vocal.  I had left a message with the specialists office last week and did not receive a reply.  After my increased confidence from these message boards I decided to walk into the office today and explained I had not been contacted and wanted to make my appointment.  It took a couple of minutes for the front desk ladies to talk to the schedulers, but I was fit into a slot this Friday morning!  I had been told it could be a several week wait, so I feel very blessed to be seen so soon.

I received a copy of the imaging results and they confirmed what I was told at the time, which is they did not find anything on the imaging, with a BIRADS score of 1.  But it does recommend an MRI or Ductogram if the discharge becomes bloody, which it already is.  

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Jun 5, 2019 05:38AM Salamandra wrote:

Good for you!! Well done!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jun 14, 2019 12:39PM CGLion wrote:

I saw the BS last Friday. She tested and confirmed I had blood in the dark brown discharge from my trouble duct. She did a quick physical exam and did not feel the lump my first doctor felt but stated I had dense breasts. She reviewed my mammogram and ultrasound and again commented that my breasts were dense. I had been told this during my mammogram, but then was only given a BiRad density rating of "B-". So I'm a bit confused there because it seems to be contradictory to what I have been told verbally. She advised due to my family history and dense breast tissue she was ordering an MRI instead of doing a ductogram of the trouble duct. She told me she does think the discharge is from a papilloma but will wait for the results from the MRI. So now I just have to wait to schedule the MRI until my cycle starts.

She stated if the MRI is clear we will follow up in 6 months and she would ask me to change my diet and abstain from consuming caffeine. I'm more a soda drinker not coffee so I really don't consume much caffeine to begin with. I guess I am a little concerned about waiting because I had been told they usually remove the duct if there is a papilloma present due to the possibility of malignancy. But I also realize if it is malignant it would probably show changes on imaging in 6 months and if it doesn't change I can avoid an unnecessary surgery. Has anyone been diagnosed with a bleeding ductal papilloma that was not removed? If so did is cause any future issues, other than the bloody discharge?

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Jun 25, 2019 11:33PM CGLion wrote:

I just got the results from my MRI on Sunday. Haven't heard from my doctor yet so hopefully they will call tomorrow. My MRI came back with a BIRAD 0 - needs additional imaging recommendation. I just had the diagnostic mammogram and ultrasound 4 weeks ago, but hopefully they will be able to figure out what is going on. The report included the following:

"IMPRESSION: Right breast: Heterogeneous nonmass enhancement throughout the retroareolar right breast demonstrating linear and segmental distribution raises the concern for underlying ductal carcinoma in situ, especially given the provided clinical history of bloody nipple discharge. Further evaluation with mammography may be indicated in order to determine whether suspicious calcifications have developed. In the absence of calcifications, second look right retroareolar ultrasound is recommended."

"Right breast: There is heterogenous nonmass enhancement demonstrating linear and segmental distribution throughout the right retroareolar breast demonstrating focal regions of washout kinetics. There is associated increased skin enhancement throughout the anterior aspect of the right breast."

So now I'm just waiting to hear from the BS office to probably schedule another diagnostic mammo/US. I'm just curious why they have not recommended a biopsy, but I guess maybe they don't know exactly where to biopsy? I honestly was hoping to get a clear answer from this report but I guess it is more waiting. But with the radiologist actually mentioning the possibility of DCIS at least I know it is being taken seriously.

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Jun 26, 2019 01:55AM CGLion wrote:

I was doing some google searching and came across this report written describing some of the language that is used in MRI reports, and what it means. I found it really useful, but it did not explain the "increased skin enhancement" that was noted on my report. Hope someone else can find this useful also!

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Jun 26, 2019 02:48AM AliceBastable wrote:

If there is any possibility of malignancy, would it be a Birad 0? I thought that meant a pretty solid NO. I hope Djmammo sees this thread (he's a radiologist), or someone else who also knows about the technical terms.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Jun 26, 2019 06:32AM MelissaDallas wrote:

Bi-Rads 0 means incomplete because more imaging recommended, not negative.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jun 26, 2019 09:21AM - edited Jun 26, 2019 09:26AM by CGLion

Alice, thanks for posting! I did post to djmammo's board asking some questions about the report language and the recommended follow up imaging. Thank you for making sure I knew about him :)

And Melissa was spot on about the meaning of BIRADS 0, as far as I understand. BIRADS 1 is the no findings score, I had that on my first mammo and US. But it looks like that imaging probably missed something since I'm being sent back for it to be redone based on the MRI results.

I thought I was handling this well, but I only slept 3 hours so I think I'm more stressed than I am acknowledging! I think actually seeing DCIS written as the concern on the imaging report made me feel like I took another step up the ladder :/

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Jul 6, 2019 01:23AM CGLion wrote:

I had my second look Mammo and US last Wednesday and picked up the report today. My new BIRADS score is 4B. The same radiologist who read my MRI also read these images and talked to me before I left the facility Wednesday. He told me my case was a difficult one, he was hoping for find something more definitive on the mammo or US to confirm the MRI findings.

After the US the radiologist came in and they completed more looks of several areas. They ended up finding the lump my initial doctor had felt (I honestly had forgotten about it after the MRI findings). The radiologist stated it look like normal tissue and was not concerned about it at all. In the retroareolar area, where the MRI findings were, he saw a couple slightly dilated ducts. There were a few other spots they looked at, but they did not see any significant doppler flow.

The radiologist advised he was still concerned about the MRI results and wanted to do a biopsy of the retroareolar area. He explained why he was comfortable doing a US guided biopsy and advised he would take samples using the "fan-technique". He is using this technique because the entire retroareolar area had enhancement on the MRI in a segmental and linear pattern following my ducts. He did not see one specific spot he wanted to specifically target. The biopsy is scheduled for next Thursday, the 11th.

I'm just hoping the biopsy will be successful in explaining what is going on, and doesn't make it harder to further evaluate the area if needed. I also want answers so I can move forward with the genetic testing I'll need after finding out, last weekend, my grandmother's birth family has a confirmed BRCA1 mutation.

I'm so thankful for these boards during this time! It really helps to just talk about all the nitty gritty stuff I would otherwise just hold inside and stew on.


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Sep 24, 2019 01:35AM CGLion wrote:

Well, I wanted to give an update and hopefully get some insight into what to expect from my upcoming ductal excision and excisional biopsy.

The results from the US guided core biopsy samples was normal breast tissue with focal foreign body giant cell reaction. All of my physical symptoms were continuing and some were worsening. I had my follow up with my former BS. During that appointment it was obvious she had not read any of the imaging reports or the pathology report. She was not intending to follow up on the issue at all because the pathology results "were completely normal". When I asked about my continued worsening symptoms, including the bloody nipple discharge, she told me "that's just the way you are". She then told me to stop drinking caffeine and the bloody nipple discharge should stop.

The BS said because I was high risk I would have a mammo in a year and a MRI in 2 years, but we would not be following up on the concerning MRI results or my continued symptoms. As I was being lead out of the examination room she stopped me and said she would see if the radiologist had any recommendations. After reading his report she became angry and stated "now I have to do something" referring to his recommendations of an excisional biopsy consultation. The appointment got even worse and I left knowing I needed to find a new BS. I also was very confused since the BS and radiologist had such completely different opinions on what needed to be done. I wanted to come back here earlier to discuss this, but every time I started to write an update post I became too anxious. I figured it was just easier for me to wait until I had a new BS before I updated everyone here.

It took two months to find someone new, get another referral and have an appointment, but wow what a difference. The new BS and all the staff at the new office are amazing and very knowledgeable! I found this office using links DJMammo posted to accreditation websites. I am so glad I took the time to look and do some research. The new BS told me with my symptoms lasting as long as they have at the very least I need to have a ductal excision to hopefully stop the problem and ensure nothing small was missed during the core biopsy. They also are going to have one of their radiologists do a second look at my imaging to make sure they agree on the conclusions made and develop an excisional biopsy plan. I was scheduled for surgery on October 3rd. The BS told me my case was complicated, but he would make sure we found out what was happening.

At the same appointment they had me talk to a genetic counselor and together we decided it was beneficial for me to have genetic testing done.

I highly encourage anyone who does not feel like they are having their concerns addressed or questions answered to find an accredited breast center. It took a lot of leg work, but was so worth it.

I also was wondering if anyone else is willing to share their experience with ductal excisions and excisional biopsies. How long was the recovery? Were there any obvious changes to the appereance of your breast?

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Sep 24, 2019 07:10AM Ingerp wrote:

Excisional biopsies/lumpectomies are easy, short surgeries with minimal recovery time. I always took 2-3 days off as a treat to myself, and took the prescription pain meds for a day or two (for the same reason!). Many women are fine with OTC pain meds. For a small one there shouldn't be any noticeable changes, particularly after the swelling goes down.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Sep 24, 2019 03:32PM CGLion wrote:

Thank you so much! I didn't realize how worried I was about possible cosmetic changes until the last few days....funny how those things can sneak up on you.

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Sep 26, 2019 09:06PM CGLion wrote:

I am just so emotionally tired at this point.

I got a call from my new BS, Physican's Assistant today. It looks like my scheduled surgery will be delayed, but they haven't cancelled it yet. I was told they received my previous imaging today and after their radiologist reviewed them she most likely will want to try for a MRI guided biopsy. But, due to this being a new imaging center I have to have another MRI with their machine before I can have an MRI guided biopsy. She advised they want to use their most powerful 3T MRI to get the most detailed images they can this time. The down side is this MRI is apparently smaller in size and my weight is borderline whether I can fit with the breast coil in place, but she advised having seen me in person she was confident it would not be a problem. I said I would bring a stick of butter with me just in case, lol.


She said they will probably have to fight with my insurance to get the MRI approved since I just had one 3 months ago, but that they have enough ongoing clinical reasons she was positive it would ultimately be approved by early next week.

When I asked about my surgery date she told me it would depend on the results of their MRI study and if the radiologist still recommended an MRI guided biopsy after that study. She said if I was "upgraded" after a biopsy it would significantly change my surgical plan. She told me at this point the main goal is to try and rule out a cancer and the wait caused by the additional imaging should not be long. I don't exactly understand why the change from a ductal excision and excisional biopsy to the additional imaging and MRI guided core needle biopsy, but I do completely trust this team.....I just am one of those people who really wants to know all the little details.

Emotionally I just feel like I have taken several steps backwards going back to the imaging phase. Logically I completely understand it, but I just have had sooooo much imaging already this summer, and I was told I will need to have surgery no matter what, I just want to get this stage over with.

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Sep 27, 2019 03:11PM Lea7777 wrote:

CG Lion, so sorry for all this stop and start stuff. You are correct to want to know the details.

You asked about excisional biopsy recovery-- for me, one down day, then return to daily activities but no heavy lifting (beyond a grocery bag) for a couple of weeks. I traveled internationally under rugged conditions with heavy lifting 24 days after the surgery, no problem. Similar recovery for my second excisional biopsy, but no travels involved. Pain levels never exceeded a 2-3 and I did not need the strong meds.

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Sep 27, 2019 03:39PM HopeWins wrote:

Echo excisional biopsy experiences. I thought it was a piece of cake. Less traumatic and painful for me than the core needle biopsy I had (mammogram assisted). Worst part was probably the wire placement to guide to the correct spot just prior to surgery. Not sure if you'll need that or not but it's similar to a core needle biopsy that's mammogram assisted. Difference being I stood up instead of laying face down and it was just a little gentler, less painful (for me).

I had surgery on a Thursday and took off that day and Friday. I could have worked Friday honestly. I just wasnt sure what to expect. A little bit of tenderness that tylenol took care of. My scar is so skinny, you can barely see it but it is longer than I expected - about 2" for a 1cm mass.

Good luck! Love your tenacity!

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Sep 28, 2019 03:20PM CGLion wrote:

Thank you both so much! Hearing both of your experiences with the excisional biopsy my fingers are crossed my surgical plan gets to stay the same! And also thank you for your words of encouragement, I didn't realize how much I needed that :)

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Sep 28, 2019 09:59PM Cowgirl13 wrote:

CGLion, don't feel like you are going backwards--you are going forward! It may not feel like it but you are. Sounds like you have a very, very good team and this means everything. Thinking good thoughts for you.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Oct 10, 2019 06:44PM CGLion wrote:

Again, thank you all so much for the support. I just had the new 3T MRI today and was already called with results by my new BS's PA. Though I don't have the specific terminology from the report what I was told is the new radiologist is not as concerned with what the previous radiologist saw as far as the segmental non mass enhancement goes. From what I understood on the better MRI image she feels it is more likely a background type enhancement. But there are two new areas of enhancement that they want a closer look at, one in each breast. I am scheduled for an US next Monday to see if they can find these spots using that method. After that the radiologist, BS and PA will get together and come up with their recommendations for both my long term screening and for the current acute symptoms I am having. The PA told me it could be a US or MRI guided biopsy, 6 month follow up MRI, or excisional biopsy when I am having the ductal excision. These imaging results honestly sound better than what I had previously, but I really look forward to being able to read the actual report so I get a full understanding of what was seen, and not the filtered for patient transcription. I also really hope they can see something on the US at this clinic. also hoping the left breast is nothing, as I haven't had any issues or concerns with it so far.

On another note having an MRI at the 2 different clinics I discovered the type of cradle (or whatever it is called) they have makes a HUGE difference in comfort level. I was really dreading getting this scan again because it was soooooooo painful last time. This time they had a cradle that was one piece and had a gentle slope up to the chest area, then the openings for the breasts. It did not hurt at all, uncomfortable sure, but not painful. If you have had to go to a clinic where the cradle is several pieces and caused you pain, maybe talk to your dr office and see if there is another clinic that has a different cradle available, I don't think I will ever choose to have a breast MRI done with the other cradle again now that I know there is one available that does not cause such significant pain. I will probably ask what brand/type it is when I go in for my US so I can share that with you ladies who have also had painful MRIs so you can ask your imaging centers if they have that style available.


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Oct 17, 2019 01:09AM CGLion wrote:

I had my new US and the radiologist found the enhancement seen on the MRI in the retro areolar area. There was some dopler flow but the radiologist said she believed it was an intramammary lymph node. She told me the image they had gotten from their MRI was significantly better then what I had the first time. She advised she did not know for sure why the enhancement was different between the two, but she was confident in the imaging they had done and was no longer worried about the non mass enhancement seen on the first MRI. She advised she would send the report to my surgeon that day. This made me feel a lot better and that the ultimate outcome will probably be benign.

I was called yesterday by my surgeons office to schedule the ductal excision for tomorrow. The scheduler did not know the specifics of if it was decided to still biopsy additional areas due to the clinical changes, but I should find that out tomorrow after I check in. I'm just happy to be getting answers and definitively finding out what has been causing the bloody and clear nipple discharge and my other breast symptoms.

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Dec 29, 2019 10:07PM - edited Dec 30, 2019 11:09PM by Khakitag

This Post was deleted by Khakitag.
Shari taglavore Surgery 1/4/2020 Lumpectomy: Left Dx 1/14/2020, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+

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