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Topic: Abuse Survivor Struggling With Testing

Forum: Waiting for Test Results —

For members not diagnosed with breast cancer, but waiting for test results:  Biopsy, mammogram, ultrasound, or other screening tests. Waiting is VERY difficult but remember...

"Worry does not empty tomorrow of its sorrow. It empties today of its strength." -- Corrie Ten Boom

Posted on: Nov 19, 2017 02:37AM

DagnyT wrote:

Hi all,

Is there anyone out there who is a sexual abuse survivor or who suffers from PTSD for other reasons who is having a bad time with the various testing procedures? I have had my issues well managed for more than 20 years through a combination of lots of therapy, meditating and EMDR. But my childhood abuse definitely involved my breasts. I have avoided mammograms, and had ultrasound and MRIs instead because it is the compression which triggers my issues. Earlier this week my ob/gyn insisted that I needed to get a mammogram after I learned that a sister had BC in her early 40s. Despite the technician and the Dr being lovely, I had informed them about my background and fears, I had a terrible reaction. I couldn’t control my shaking and ultimately threw up andpassed out. (For anyone reading this who does not have my kind of background, please know that there was no pain at all and everyone was very sweet - this is a PTSD issue for me). I have had terrible flash backs and nightmares daily since then, I can’t sleep and I haven’t been able to return to work yet. My ob/gyn perscribed me a couple of Xanax, which actually made things worse....when I took them I felt like all the awfull feelings and flashbacks were still there, but in slow motion and I felt trapped and unable to get away from them.

Unfortunately they found calcification in both breasts and now tell me I need to have multiple stereotactic biopsies. I can’t imagine how I will be able to handle those procedures. Has anyone else had problems like this or can anyone recommend some coping techniques for the PTSD?

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Nov 27, 2017 12:36PM DagnyT wrote:

Thanks MTWoman. This was the only thing I've felt positive about for the past week or so! I'm just trying to remember that in about 30 hours from now the biopsies will be done and then I can get back to focusing on my well-being without the fear of that procedure hanging over my head. I appreciate your support.

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Nov 27, 2017 04:52PM MTwoman wrote:

Good perspective! keep moving forward as best you can. Listen to your body and provide the best you can for your own support and comfort. We are all "in your pocket"!!

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Nov 27, 2017 08:46PM DagnyT wrote:

great news! Just back from CVS and am now armed with some meds to help me get through tomorrow. And now it is less than 24 hours until this part will be behind me. So I am just counting down the hours and trying to sta6 calm.

Thanks MTwoman

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Nov 28, 2017 10:49AM MTwoman wrote:

Woohoo! so very glad to hear it. Do practice all of the tools in your arsenal to stay present and mindful (breathe, ground yourself, etc). Now that you have medication assistance, and have a well-informed support/treatment team, I just know you can get through this. Thinking of you and sending much calming energy!

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Nov 28, 2017 11:20AM - edited Nov 28, 2017 11:21AM by Lula73

great news! Wishing you peaceful thoughts, a good nights rest before and after and an uneventful biopsy. 😊

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Nov 29, 2017 10:23AM - edited Nov 29, 2017 11:51AM by DagnyT

Hi everyone. Well, I made it through. Parts were better, and parts were worse, than I had hoped. I'm going to write a separate thread about the experience that isn't focused on the PTSD side of things, so as not to worry anyone who doesn't have those kind of issues.

The better parts:

The EMLA cream really helped. I didn't even feel the prick of the needle, and hardly felt the burning of the lidocaine on the L side. Unfortunately not the case for the R side. My dr warned me that being just under the nipple and so close to nerves, it was going to hurt. And it did and they had difficulty with that side, so I had to go through the shot twice (when they decided to come at it from a different angle). But it was bearable and didn't last too long.

Once the lidocaine took effect, I had absolutely no pain at all from the needle, the actual biopsies or the marker insertion.

I took both Ativan and a pain killer, which kept me calm enough to stay still (it took 2.5 hours overall due to the difficulties with the R side). So I was able to make it through both sides!

The worse parts:

I was already very tender from PMS on both sides (rotten timing!!!). Despite Having taken pain medicationin advance, the compression was incredibly painful! Having just been through my mammogram a week before, the only difference was my PMS tenderness and the experience between the two was night and day. We had to take a 15 minute break and I took additional medication. So while the needles and the biopsy itself were almost pain free, the compression was unexpectedly awful. If I had not been on pain meds, I would have had to cancel the whole thing.

I was also surprised by the amount of pulling and stretching and manhandling (no pun intended) of my breast that they had to do to get me placed correctly in the machine (and I have plenty of breast tissue, so that was not the issue). Everyone was lovely and had been told about my issues and they explained everything step by step. But that part was unexpected and emotionally and physically uncomfortable.

The one nurse who was assigned as my “comforter" was very kind and checked in with me and kept me informed. As some others have described, she had her hand on my back the whole time. Unfortunately, despite the fact that I was not moving at all, she kept a really firm pressure on my back that made me feel trapped and pinned down, like she was trying to keep me from escaping. That did trigger my PTSD and was honestly the worst part of the whole procedure for me. I know I could have spoken up and said something, but I was feeling guilty for having already asked for a lot of accommodations and I knew her intentions were kind. So I just clammed up.

So, I didn't really get any sleep last night between nightmares/flashbacks and swapping out ice packs (definitely a really good help for the swelling and discomfort once the lidocaine wore off). But this part is behind me now.

Thank you all for being a supportive place for me to share my particular issues. It is helping more than I can say

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Nov 29, 2017 10:42AM Lula73 wrote:

Dagny- sounds like you did very well! So glad. I’m sorry you still had a difficult night. I’d be tempted to try an Ativan before bed tonight to see if it might help. I’d imagine you’re still very on edge. On the comforter nurse-anytime something is making you uncomfortable and it’s not a vital part of a test/procedure, always speak up. Instead of having her hand on your back, you could have held her hand which would’ve put you in the control position. That way you can get the comfort she was there to offer and not feel trapped. There’s a lot with cancer and testing that makes you feel out of control/strips control from you. But it’s the areas where we step up and take control that keep us sane. Don’t be afraid to take control and do the things that I know are in your thoughts. Otherwise the control takers win. You coming on this forum, asking for help, reaching out to your providers for what you need and making it through the biopsies is proof positive you have the strength within you. Hoping those biopsies come back benign!

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Dec 3, 2017 09:50AM DagnyT wrote:

hi all. Unfortunately my results came back with DCIS, microinvasion of IDC, ER+/PR borderline +, HER2-. All located right behind my R nipple, very close to the surface. Plus I wasn’t able to get the biopsy I wanted to check for Pagets (which my radiology dr agreed was something she was concerned about based on where the calcifications were located and where my external symptoms are).

So, I’m kind of falling apart right now. I have an appt with a new psychiatrist in two week, the fastest anyone could see me (and only because my old dr who retired pulled some string for me). I’m not so much upset about the diagnosis....I know enough to understand that this is not a terrible or aggressive diagnosis. I am back into my PTSD problems over the treatments and procedures ahead of me. I genuinely feel right now that I would rather leave this bc inside me than have to go through wire insertions and SNB. If they would put me to sleep, they could do anything they want to me. But from all I have read, that is not an option.

So for right now I am in limbo land for a while. I’m waiting to try and get an appt at Dana Farber.....I live in CT, so I am between DF and Sloan Kettering in terms of distance.

If anyone has recommendations for good doctors at either place, I’d be grateful for suggestions. My ob/gyn is useless and my great radiologist dr doesn’t know anyone outside of CT (and she recommends that I go somewhere more high end because my case is complicated by location and by the possibility of Pagets).

Thanks everyone

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 3, 2017 03:56PM Bhmomma wrote:

Dagny, I am a long term lurker who also lives in CT. I am in Fairfield County and chose to go to MSK once my mammo/US showed changes they wanted to biopsy. I saw Dr Andrea Barrio for surgery and loved her. She sees patients in their Westchester County facility (which made sense for me as I work directly across the highway), but does surgery in NYC.

Also I read you have concerns about the wire localization, but MSK (and perhaps Dana F) perform radio active seed placement and localization instead of wire localization. It seems much better tolerated by most.

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Dec 3, 2017 07:02PM MTwoman wrote:

Oh Dagny, I am so very sorry. I think it is time to get a Nurse Navigator on board to help you look at your choices, considering not just your bc diagnosis but how each of those choices will affect your mental health. You don't have to rush this. As you collect information, the best choice for you will become firmer in your mind and then, just as with the biopsy, you will make a plan that supports you as best you can arrange. You are in my thoughts. And, we continue to be with you.


Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Dec 3, 2017 07:15PM DagnyT wrote:

Bhmomma, thank you so much for the recommendation. I will definitely look up Dr Barrio.

MTWoman, I don’t know how to find a nurse navigator. I don’t have a doctor or a care location yet. My local ob/gyn has been useless and because she has ignored both my physical Pagets symptoms for two years and my PTSD concerns about diagnostic testing, I have no confidence in her anymore. She already told me she did not have any rrecommendations at any recognized breast care programs and basically told me good luck taking care of this on my own. My very lovely radiologist who did my biopsies also told me she did not have any referrals she could give me that were not local, and she recommended earlier that I be seen at a major facility due to my complicating factors. So I’m not sure what to do next....

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 4, 2017 12:56PM MTwoman wrote:

Both MSK and Dana Farber should have these on staff. When you call to set up your initial consultation, please let the scheduler know that you'd also like to meet with their Nurse Navigator on the same day, if possible. That lets you begin to see how (each?) facility can be responsive to your needs and supportive of your whole self - not just your breasts. They may even have outreach to help you pull together questions and or prior reports/imaging (speak to someone on the phone before your appointment), so I'd ask about that.

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Dec 4, 2017 04:01PM DagnyT wrote:

Thanks MTWoman. I just got an appointment at Dana Farber for Wednesday morning, through the help of an ex-colleague who was treated there. I have tracked down and sent over all of the records that I have access to. So now I just have to wait a little longer and hope that at the very least I can get tested for Pagets quickly, since that changes everything about possible treatment options. The person making the appointment said that I would meet with the actual surgeon (Margaret Duggan) and also her "nurse". I don't want to bug these lovely people who have been so great about getting me in so fast with dumb question.....do you think the "nurse" is the nurse navigator? Or should I call back tomorrow and ask?

Thanks so much.

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 4, 2017 05:13PM MTwoman wrote:

Typically, a nurse navigator is separate from your provider's nurse. You can call them in advance or ask them when you're there if they have one (quite sure they will) and can they get you connected. Let me reiterate, it is NOT "bugging" them. They want to provide good care for you, and part of that is making sure that you have the most appropriate team, including a nurse navigator (if you'd like one). So DON'T BE SHY!

Heart

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Dec 4, 2017 06:27PM DagnyT wrote:

ok, thank you! I have been trying to put all my info together in a binder to take with me so that I will hve extras of whatever doesn't find its way to the right place. i saw that recommendation on the just diagnosed forum.

I will call tomorrow and ask about the nurse navigator. I need all the help I can get!

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 4, 2017 07:03PM HoneyBadger47 wrote:

Dangy,

I'm sorry you got that news. I will be sending good vibes your way for continued strength and comfort.

I just want to say I am hugely impressed with your ability to take action, even with the cloud of ractivated PTSD hanging over you. I would imagine that would be crippling.

You are getting great advice. Keep pushing forward and take care of YOU.


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Dec 4, 2017 10:30PM Kicks wrote:

The BC Navigator at least at my Facility - (a cancer center but not exclusively OF) was 'in on' the individual - not the TX. The first time I went in I checked in and then sat down in the waiting area. Almost as soon as I sat down Patty (Navigator) came over, gave me her card so I had her extention IF I needed her. She made sure I knew about 'Look Good - Feel Better' and when the class would be. Before my hair 'left' she had a really cute wig for me. Unfortunately/Fortunately it wasn't really 'me' but when I went to the 'LG - FB class I took it with me and there was a lady there who it was absolutely perfect for so she got it. It turned out that the Master Cosmetologist (who was doing the class) had gotten in a box of wigs from the manufacturer a couple days before for BC women. There was 1 that she thought she'd never find someone for as it was gypsy shag - wrong! I went to her salon the next day and left with a great wig for me.

During my 16 Chemo (4 DD A/C neoadjuvant, 12 weekly Taxol adjuvant) and 25 rads, she made sure that she talked to me personally at least every other time I was there. She called me several times after active TX 'just to check in' and see if I needed anything.

A suggestion - get a note pad and keep it handy to write down all questions you come up with and take it with you to your appointment (make an extra copy to give to Dr) so that your questions are addressed/answered. If allowed, use your smart phone to record the information you are given so you can review exactly what you were told.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Dec 4, 2017 11:44PM chronicpain wrote:

Based on previous posts, it sounds like your first new psychiatrist appointment is around December 17. It is so important to get you on an appropriate PTSD med regimen ( plus counseling of course) as you are going to have a lot more prodding and poking of breasts in the next few months.

Even if the appt is not until around 12/17, I suggest telling them that you are available sooner for short-notice if there are cancellations, or for a different psychiatrist ( still one who can prescribe, not just a talker)if an appointment opens up sooner. Many psychiatric patients who get scheduled cancel their appointments short notice so it is not impossible that this could work.

Dx 10/2017, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 11/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy
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Dec 5, 2017 12:53PM DagnyT wrote:

Thanks everyone. Your support really helps.

My apt at Dana Farber is for 11am tomorrow morning and I have typed out a list of about 25 questions and have a full binder of every piece of info I could get my hands on to bring with me. I did call back to ask if the "nurse" I was going to see was a nurse navigator....I am kind of shocked, but apparently Dana Farber doesn't have nurse navigators. So, that is a bummer

Chronicpain, I was reading up on hormone therapy, as it seems pretty likely that will be part of my treatment since i am ER+. Bad news there....many anti-depressants cannot be used if you're on hormone therapy (apparently they block the effect of the hormone therapy). I've added that to my long list of questions for my dr tomorrow. I don't want to waste time even discussing medication with a psychiatrist if I'm not going to be able to take it.

My plan for tomorrow is to drive to Boston and bring an Ativan and my EMLA cream with me. If the dr is willing to do the pagets biopsies tomorrow while i am there, then i am going to tell her i need 45 min for the Ativan and the cream to take effect and I made a hotel reservation so I can stay over and not have to drive.

I'll let you all know how it goes on Thursday.

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 5, 2017 07:14PM chronicpain wrote:

DagnyT, ( BTW, given your username, are you perhaps an Atlas Shrugged fan? :), do not assume it would be a "waste of time" to talk to a psychiatrist about medication prescriptions just because you are estrogen positive and anticipate estrogen blockade. Do talk! One step at a time!

What you may be referring to ( especially if you are still pre-menopausal) is use of tamoxifen, where some antidepressants ( which are also often used in PTSD) can diminish tamoxifen effectiveness if they inhibit an enzyme called CYP2D6. Paxil is the most notorious inhibitor of this enzyme, and there are others like prozac ( postulating you might have tamoxifen ultimately be offered to you, maybe it will not be) , but not all mood meds do, so many are not contraindicated with tamoxifen, e.g., citalopram is usually ok. A good psychopharmacology trained psychiatrist can usually find a good choice or two,

A psychiatrist can also prescribe anxiolytics to help deal with your procedures that have no relation to anti-estrogen therapy, and she can work with counselors and your oncologist in a multidisciplinary approach to find a cocktail of med and behavioral approaches that works and are safe and effective, custom to your needs.

The computerized medical record, if you get all your problems and meds correctly entered in, can also check for significant cross-reactions each time a change is made.

You are just getting started on your course of therapy, so though it is superstressful, and overwhelming, stay as optimistic as possible.

Here is a link to a brief discussion on this forum of antidepressant meds interacting (or not interacting with) tamoxifen

http://www.breastcancer.org/treatment/hormonal/ser...


Best of luck tomorrow

Dx 10/2017, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 11/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy
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Dec 6, 2017 05:56PM chronicpain wrote:

DagnyT, if you are up to it, let us know how it went today hopefully ok. I was thinking about you today as I drove from one doc appt to the next, and then to the drug store and lab. I am fortunate to be close to all my providers, unlike you


Dx 10/2017, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 11/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy
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Dec 7, 2017 06:12AM DagnyT wrote:

thanks for checking in chronic. It was a long day (6 hours of driving and crappy traffic!) and didn’t go so well, so I wasn’t up to posting last night.

So the good part is that after poo pooing my Pagets concern when we were talking, once the bd bothered to actually look at my nipple area she agreed that it needed to be biopsied. So I put my plan in place, pulled out my handy EMLA cream and asked her if we could do it in 20 min (I had already taken my Ativan earlier because I found myself shaking uncontrollably once I got to the hospital). She wasn’t the one who even did the biopsy, it was her nurse! But I made it through, and it was a lot less painful and stressful than the other biopsies. I did get a little satisfaction because I warned the nurse (who was very sweet) that I am a big bleeder. She smiled and reassured me not to worry about it, she’d take good care of me. Well.......I left blood all over that exam room!! By the end of everything, after I bled through 4 different dressings (and unfortunately my bra) she laughed and said I wasn’t kidding about being a bleeder!

I should get results from the Pagets test on Monday. That timing should work out, I hope, since I have a second appt with a bs from Sloan Kettering on Tuesday morning.

I’m not sure if my expectations were too high, or my difficult emotional state made it hard to relate to the bs yesterday or if she just wasn’t a good fit. The first thing I explained to her was about my abuse background and the difficulties I had been having with procedures so far. She listened appropriately and said that she could understand that this was going to be a hard process because of my trauma issues. But then when I got out my list of questions (I had typed it out in advance to make sure i wouldn’t forget things) she started brushing off a lot of things I asked. She told me most questions I had about my actual diagnosis and path report couldn’t be answered until they had taken everything out and done a final path review. Ok, that makes sense. But when I got to my questions about treatment options, radiation, chemo, hormone therapy she just said that she couldn’t answer any of those things and I would have to talk to the RO and medical oncologist after surgery. When I pressed and said that some of the answers to my questions would impact my surgical decision, she sighed and said ok she would see if I could get an appt with the RO. And when I asked her about the Pagets she looked right at me and she said that she understood with my background that I wanted to be in control of things, but that I needed to stop doing that and let her do her job and that I was being “very controlling” and she would decide what she thought was medically necessary. When she did finally look at my nipple her tone changed a bit and she did agree that a biopsy should be done.

When I asked her about interactions with meds for PTSD, she said that was between me and my psychiatrist and that as long as I didn’t take 20 ativan right before surgery, then it wouldn’t impact anything she did.

So I left with lots of unanswered questions and not feeling much of a connection with the dr and waiting to hear about getting an appt with a RO. But at least I got the Pagets biopsy, so that alone was worth the trip.

And, I was disappointed / mad enough that I made calls yesterday and sent out all my info to a different bs at Sloan Kettering and was able to get myappointment for Tuesday. So I guess I will be able to compare and contrast the two doctors and see how much of this is me and how much is just about a good fit.

Thanks everyone for listening and checking in on me

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 7, 2017 06:57PM HoneyBadger47 wrote:

Dangy,

I think it is obvious who is “very controlling” and it is not you! She would not be a good fit for me either. Your gut will tell you what to do when you meet the other surgeon.

I met with an oncologist prior to my surgery. The surgeon actually suggested it was a good idea. I ended up going with a different surgeon. Absolutely nothing wrong with the first one I saw. I based it on best fit for me, including all were used to collaborating with each other.

I would suggest you meet with an oncologist, or at least start researching based on the experience you outlined above. She is likely a skilled surgeon and if you have to go with her then fine. Butwhy wouldn’t you find someone who is skilled and not arrogant?

I can take some arrogance but her telling me she will tell me my decision....no way.

Glad you got the biopsy. Glad your plan worked and it wasn’t painful. Laughed at the bleeder story. You showed her!

Someone on here said this whole cancer thing is a “choose your own adventure” experience. I wish I remembered who said it! It is so true.

Up to you if you want lumpectomy or mastectomy with recon or not. The informed decision, for me, was important. I saw your post about meeting with a PS beforehand, too. I highly recommend that. I met with two.

Good luck building “your” team. Hoping biopsy is b9.

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Dec 7, 2017 07:00PM Georgia1 wrote:

Dagny, thank you for keeping us up to date. Some surgeons are just like that; it's disappointing but their training makes them so removed from actual human emotions that they are hard to interact with! I'm glad you have a second opinion scheduled with SK. My surgeon got me an appointment with an RO pre-surgery so I could get all my questions answered, at least in a general way, and that helped me a lot. It's nuts that this process becomes a second job but that seems to be the way it is. Sigh.

Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast
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Dec 8, 2017 12:00AM DagnyT wrote:

thank you Honey and Georgia (and all the others who are faithfully providing me support here). On some other threads I feel it is important to focus on the positive and be more of a cheerleader...which is my normal “half full” personality. But on this thread I feel like it is ok for me to let down my guard and ask for help and not worry that I’m bringing others down. That’s why I put the issue of my abuse right in the title of this thread....so readers could be informed.

You wonderful people are really helping me deal with some of the more distinct problems I am working through.. and knowing that you have all walked in my shoes with bc is incredibly meaningful and lets me know that there are parts of this journey that I don’t need to explain....you’ve all been there. So it makes me feel like I have the ability to talk more about the other aspects that I need advice on.

I am very grateful to you all.

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 12, 2017 05:25PM DagnyT wrote:

hello everyone...it’s been a very long, but not terrible, day. I will post more tomorrow when I have more energy, and hopefully sign off for surgery (pre-op visit made them worried about some heart issues....so having to follow up on that tomorrow). But what I need to say to all of you on this thread is a very heartfelt thank you !

You all supported me and validated my feelings that the bs I saw at Dana Farber was not the right person for me. Today I met with Dr. Barrio at MSK and things could not have been more different. She was kind, she listened to me and had compassion for my PTSD issues, she answered my questions and didn’t tell me that I’d have to ask other people for answers because “that wasn’t what she does”. When I asked her if she thought she could save my nipple, she said that she wasn’t sure, but that I would not wake up without a nipple...even if it had to come off in a second surgery. She actually said that she was not going to do anything that I had not pre-authorized, and that patients give up enough control when they go into the operating room and it would be unthinkable to her for me to worry about waking up without a breast or a nipple...the total opposite of the bs at DF who actually said I would need to sign consent for additional procedures so she could decide what was best in the operating room!

Without your kind support, I might not have been strong enough to get a second opinion and might have ended up with so much more worry and problems than necessary.i now feel confident that I have a kind surgeon who is seeing me as a person and will help me though this process.

Thankyou, thank you, thank you!

dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-
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Dec 12, 2017 05:47PM HoneyBadger47 wrote:

Dangy,

So glad to see your post! I have been wondering about you. Sounds like a great surgeon at a reputable facility. I meant to tell you that even though my facility had a nurse navigator, my surgeon’s PA coordinated all of my appointments and she was my main point of contact on what was next based on a review with all of my doctors, etc. she was wonderful. I hope you will have something like that.

I’m sure your surgeon could give you some names of oncologists, etc.

Go get some rest. Can’t wait to hear more.

Good job advocating for yourself!

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Dec 12, 2017 06:20PM MTwoman wrote:

So VERY glad to hear it Dagny! She sounds like a much better fit for you. The more confidence you have in her the more relaxed you will be able to be. So happy!

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Dec 12, 2017 06:56PM Georgia1 wrote:

So great to hear!

Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast
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Dec 14, 2017 09:03AM DagnyT wrote:

quick update to all you ladies supporting me here. So after deciding to go forward with Dr. Barrio on Tuesday, MSK is so efficient that they said i could do my pre-op the same day since I was there. When they were doing that they found a heart irregularity, so suddenly were not sure they could clear me for surgery. Again, due to their efficiency, they were able to schedule me for an appt with a cardio on Wednesday, and also to see the reconstruction surgeon. So I stayed over in Westchester again (and just decided I would have to wear the same clothes and do the old wash the undies in the sink thing). So yesterday I went through a bunch of testing and consultation and eventually got cleared for surgery, as long as it was done in two steps to minimize my time under anesthesia. That was my surgeon’s preference anyway, so all good with that. My first surgery will be on 12/28.

So then I went to my appt with the reconstruction doc, both to talk about the reduction but also to make a plan for nipple reconstruction in case my own can’t be saved. I was more than a little anxious, as this dr was the first man in any of the docs (and even nurses and administrative aids) that I was going to see. Despite my background, I haven’t generally had any issues about men. I have plenty of other issues (trust me!!!), but issues with men haven’t been among them. But since this whole journey has been churning up unexpected problems and issues for me, I wasn’t sure how I was going to feel.....

So, sometimes you just can’t make this crap up....I knew the doctor’s name, and it was unusual because it was ethnic. But for all I knew, that was a common name like Smith is in the US. So although I work closely with someone else with the same last name, I didn’t make any connection. Whelp.....who walks into the exam room as I’m sitting where in my little gown......the brother of the person I know from work. They look so much alike, it was impossible to be mistaken. So the first thing I did was ask him if his brother was a lawyer in NYC...and it surprised him and he said yes and asked if I knew him. And I said that I’d known his brother for years and we were woring on a deal at the moment and I had been emailing with him just the day before.

I had this moment of thinking that I couldn’t imagine working with this dr, because watching him examine my body all I would be able to think about would be his brother...which would be way uncomfortable to be crossing work and medical aspects of my life. But then I had a different thought....his brother is one of the smartest people I know. So the gene pool in that family is probably pretty amazing. So I decided I was goiing to take this as a good sign and that I would be in good hands and that this was the ice breaker I needed to be comfortable with this man.

So, we had a good appt. he was less certain about being able to save the nipple and so he described how they would make a fake one if necessary. Have to be honest, that part kind of made me want to pass out... but he was kind and I was able to explain to him about my background and I felt like he would take care of me. So as long as I don’t get back bad path reports from my 12/28 surgery, I’m scheduled for surgery with him on January 9th.

Feeling much better now that I have a team and a basic plan. Thank you all for being here for me


dx-12/1/17 DCIS R breast w/microinvasion IDC; ER+/PR borderline+; HER2-

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