Some tests complete, waiting to get to breast surgeon

Huronite74

Good Morning!

This is my first week here, I think I may have posted one other item... so I'm still fairly new here. I've been reading in the evenings... and think that this is the place I need to be for informaiton, support, and overall self esteem.

My story is kind of short compared to many of you since I'm just beginning this whole diagnosis ride.

July 2nd, I got back from Las Vegas, and noticed a little soreness on my right breast. I thought perhaps I got sunburnt sipping drinks out by the pool. The 'soreness' was more the feeling you might get when you have a sunburn and run a cold sheet across your arm.. It wasn't pain as much as it was just 'something' that made you go 'hmm'. So I checked my breast to see if I had a cut, sunburn, doggie claw scrape, scratch... NOTHING. Ok, so I just started keeping an eye on it. Anyhow, it got more sore so, I kept checking it more and more, which may or may not have made it irritated... be that as it may... I was on high alert.

BACKGROUND: Mom has microcalcifications and is bad at going back for check ups, so God only knows what is going on with her. My mom 's sister Barb diagnosed at 53, Stage IIB BC ER+ PR+ (not sure about HER), lumpectomy, chemo, radiation- in remission currently. My mom's other sister Sheryl diagnosed at 37 with stage IV, ER+ PR+ not sure about HER. She must of had it some time in her early 30's because by this time it had already done some pretty extensive damange. Radical mastectomy, chemo, radiation, tamoxifin, then one year of "OK" to later find out it has spread to her bones, then found spot on liver, then it spread to her brain. She died Nov. 18th, 2013 at the age of 42. My dad's mother had breast cancer. Not sure of what kind, when she was diagnosed, nothing... except she didn't die from it, she died from a car accident, so... I have no idea about her staging or any types of tests she had. My mom's uncle (my great uncle) breast cancer-- again, not sure of any specifics... this is going way back and down to Arkansaw where there was some soil testing being done to find out that jet fuel was being dumped... and supposedly they believe that to have been the source of many cancers in that area... PLUS my great uncle's two sisters had breast cancer (my great aunts)... I'm not sure THAT history is as beneficial as my most immediate family history, but I thought I'd mention it. Oh, and one more thing... my aunt Barb, and aunt Sheryl (not deceased) both had the BRCA1, and BRCA2 testing done with negative results.

Back to my story...

So, July 2nd I noticed an annoying 'feeling' in my right breast... on August 5th I had a doctor appointment with my OB/GYN for him to 'check it out'. I would normally be having a mammogram in October and I asked the Dr. if I could just 'wait' till October for my regular screening mammogram and he said "NO", that I should come in, which is why I went in on August 5th, 2015. My doctor could feel the lump I had and I told him all my pain, symptoms, etc. I didn't have nipple drainage when I called to make the appointment, but by the time my appointment rolled around, apparently I did have some discharge. He collected the specimen to send off for analysis. Meanwhile, told me I should get a diagnostic mammogram & an ultrasound. He put in the orders. I'm currently on HRT (hormone replacement therapy) and taking 2 mg of estrodial a day. I had a hysterectomy when I was 32 (i'm 41 now), and so I've been on all kinds of different hormone pills (even the combo estrogen/progesterin) ones. Those are known to increase chances of breast caner (I know)... Dr. said at the time the benefit outweighed the risk, and now we have turned the corner where the benefit doesn't outweight he risk, so I'm being weaned off of those over the next 4 weeks... cutting them in half to 1 mg.

Anyhow-- I got dressed and left... I was to make an appointment with someone to do a diag.mammo and an U/S. I couldn't get in soon to any person around my area, so I made an appointment with the Cleveland Clinic. They got me in 7 days sooner than any other person would around my neck of the woods. They did the tests and I remember the radiologist reviewed the mammogram and said she saw a cluster of something so they did the ultrasound... and it showed NOTHING. Now, I have a lump... we can FEEL it, but it's not showing up... so, she basically told me to take "Primrose" for breast pain and was going to send me on my way. I was my own health advocate and said "woah woah woah, wait a minute"... you are telling me you can't see anything... It's not a cyst? She said "NOPE", I said "What about infection"? Nope... Ok, what about the dilated duct my doctor thought it might be? "Nope"... so she then said "I can see you are really worried about this so I would suggust you see a breast surgeon for a biopsy. Ok, that sounds like a plan. I go home that day to 'think' about things and planned on making an appointment the next day. I ultimately wanted to wait for the nipple discharge results from my regular OB/GYN FIRST before making an appointment with an expensive surgeon to have a procedure done that I wasn't 100% postive that I needed. So I kind of 'held off' on making the appoinment... waiting for these results. By this time it's been almost a week and I haven't gotten my results... so I'm starting to get mad. I called 3x in a row... well Wednesday was the magical day. The lady I spoke with said that she gave the message to the nurse, and the nurse made a note in my chart that said "The doctor will be calling the patient". So I thought, crap... when the Dr. calls or insists on calling, that's not a good thing. I've always got calls from the nurse if I received a call at all. Minutes later... minutes later... I received a call and my doctor told me he hadn't received the ultra sound and/or mammogram results yet (which I knew because I didn't use their diagnostic center)... so I told him I went to Cleveland Clinic and that I did request for them to send me the results so I could get them to him, but.. he asked me what 'they' said... and I told him, and then he read me my cytology report:

"Mildly atypical epithelial groups/cells and macrophages. NOTE: Clinical and radiological correlation is required"

I googled those terms just to understand... it sounds like pre-cancer to me (or infection) but.........the radiologist, when doing the ultrasound, said "No infection, no cyst, no dialted duct, nothing"... so now I'm sitting here wondering.

My OB/GYN agreed with the Cleveland Clinic that I need to see a breast surgeon.... so,

I called the Clinic... they are out until September 25th! OMG That's kind of a LONG way away when a person potentially has 'pre' cancer. I mean, it could turn to cancer in 5 weeks, right? So they said they would 'ask' the staff if someone would 'squeeze me in'... Just got a call that they got me in on 9/11/15, but... they are still trying to get me in sooner. At least the appointment is made but almost a month seems like a long time to wait.

**if anyone out there has had similar issues and/or initial findings... please feel free to chime in and let me know how it all went for you. From what the ultrasound radiologist person said to me... doesn't appear that 'anything' is going on... but yet... there is a palpable lump. I mean, I can feel it myself, and maybe it's just me, but I can SEE it if I look at myself in the mirror. I should note that I do have saline breast implants, and I have a scar beneath my aerola that is normally not visible, and because of this 'lump' it pushes on the scar and now I can see the scar. I have had spontaneous discharge from that nipple (in two spots) one was clear, one was yellow)... not sure if that's changed because the Dr. advised me not to squeeze them. The breast is less sore today than it was yesterday because I'm trying to leave it alone. When I say 'sore', I mean, the lump itself when grabbed, squeezed, manipulated is tender... my breast just dosn't 'hurt' all over. I know they say if it hurts, then it's not cancer... and I was gonig with that theory until the cytology report.

So, is a breast surgeon the person that does biopsies? I'm lost... confused, and sad.

UGH!

SpecialK

Sorry at you have had a long process and are worried - it doesn't help, but know that this is very common. Sometimes breast surgeons do biopsies, sometimes radiologists do. I was referred out to a breast surgeon after suspicious imaging had been done on a military base, and the surgeon ordered a biopsy that was done by a radiologist at a women's imaging center adjacent to his office - all they do is this type of work, no regular x-rays, etc. I had an ultrasound guided core needle biopsy on a palpable lump that was seen on ultrasound, but not on a mammogram. Who does a biopsy depends on what type of biopsy is necessary - fine needle (FNA), an ultrasound guided core needle biopsy, a stereotactic biopsy, guided by mammogram or MRI - which type of imaging used, if any, can determine who needs to do the biopsy due to availability of equipment. The type of biopsy is determined by location of the mass and preference of the doctor. FWIW, it is also common to wait for treatment even after a breast cancer diagnosis, so I would not be worried about something pre-cancerous becoming cancerous before your appointment. Most breast cancers have been in the body for years before becoming large enough to image, so it is unlikely that this area of concern will cause problems in that short a period of time. I had my imaging early in Sept., no biopsy until the third week of Sept., diagnosis at the end of September, but no surgery until the first week of Nov. I was worried also about leaving a cancerous mass there for so long but reading these boards you will see very similar timing among many members - look at the diagnosis date and the surgery date - there is often a delay particularly if you plan to begin the reconstruction process because you have to sync up two different doctor's schedules. With the exception of highly aggressive types of breast cancer this is common timing. Hope you can get some answers soon and good luck!

Trichick1964

I have absolutely nothing to add in terms of sage wisdom and advice because I'm new to these parts as well, but I do know that waiting SUCKS! Oh gosh...the waiting and the worrying! I'm in the same boat over here in regard to waiting with biopsy diagnosis of ADH thus far (and hopefully that's as far as it goes) and have a 5-week wait for an excisional biopsy which seems like an eternity when I know there's something amiss that could end up being cancer and could also be "just" ADH. I'm with you in spirit as you wait and I'll keep my fingers crossed for you that they are able to bump you up even sooner!

Huronite74

thank you for your kind response. Waiting game sucks.

Huronite74

Well, it's been a tough week.... I have, in my possession, the results from my diagnostic mammogram (given on 8/10) and the results from my screening mammogram (given 10/24/14)-- 10 months prior. The one from Oct 2014 says I have MINIMAL fibroglandular tissue, where the latest one says I have he heterogeneously dense breasts. I thought as a person ages the lose density... not gain it? Well, My guess is... that the stuff they are calling fibroglandular tissue in my latest mammogram is the palpable lump I'm feeling that they are chalking up to 'nothing'.

I am scheduled to see a general surgeon on August 20th (this Thursday).... Woohoo... I asked the doctor's office what I should expect, and basically it's just a consult? I'm like "What?"... I mean, I have been passed on and on and on because this Dr is out until 9/11, and this doctor is out until 9/30, so... this is the guy who can get me in the 'quickest'. I'm guess that this point, I'm just going with whoever can get me in the soonest, but... anyhow, I said to the girl on the phone... what if he wants to do a biopsy, or some other procedure...but I don't want to have to wait for that then.. she assured me I wouldn't have to... that if he wanted to do something that it wouldn't suprise her if it just got done that day or the next... so... ok.

I don't know what to expect........

What will I expect from a surgeon? Can someone tell me? Bloodwork, pysical exam, tests, MRI, Ultrasound? Anything?

I can't wait to get home from work so I can pop disc #1 in from 2014 and disc #2 in from earlier this month... and see if the 'area' of concern is visible on my old mammo...

I feel like I want to vomit