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Breast Cancer Awareness Group Breast Cancer Awareness Group

Newbie here! May i please vent?

Posted by on Aug. 24, 2013 at 10:45 AM
  • 10 Replies
Hello everyone. I stumbled onto this site and read how supportive this group is. I hope i can find some support as i cant find any elsewhere to which i will explain shortly. To start, i have not been dx with cancer. However, i am considered high risk due to family history, my age of my first cycle, I'm african american, genetic testing results (BCRA1 negative, BCRA2-VUS) and ADH dx
Ok..here i go. To start, allow me to take you back to 2010. I had discovered a lump in my right breast. I went to my GP who sent me to the radiologist for a mammogram. While there, the radiologist order an ultrasound due to density. He then said that i had a cluster of cysts and i was good. So about two weeks later i returned for a FNA. I had asked when the results would be back, he said that there were no orders for it to be tested. I was fine with that although i found it odd because the lump had been there for a long time, but nonetheless, i trusted him. Moving onto November 2012, that pesky lump was back with a vengeance and i was in discomfort. Thinking it was another cyst, i ignored it until May of this year because i couldn't wear a bra without agonizing pain. So i scheduled an appointment with my new GP thinking i just needed another FNA. she gave me my clinical BE and discovered not only four lumps in my right breast but three more in my left breast. So off i go back to the same radiologist. Blah blah blah but this time when i went back to my GP, i needed them out. I hope you are still with me because it is going to get good..frustrating for me but good. So im sent to the surgeon. Surgeon says 'dont worry, we will take care of you'. I have a vacc assisted biopsy in
by on Aug. 24, 2013 at 10:45 AM
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Replies (1-10):
2curly
by Member on Aug. 25, 2013 at 7:29 AM
Did the rest of your post get cut off? I hope your biopsy gors well.
kcgryhound
by Member on Aug. 25, 2013 at 11:41 AM

Where's the rest of the story, just getting good.  Please post again!

Nora_A
by Member on Aug. 25, 2013 at 12:29 PM

Apparently when you mobile post there is a limited number of characters. Please continue, as we don't know what point you were getting to. Your post was cut off. 

itsgreatat38
by Member on Aug. 26, 2013 at 10:07 AM

Oh my!  Woooow!  I apologize I had no idea the rest didnt post!  *Feeling like a silly goose right now*

I had a vac assisted biopsy in June of this year.  This is where I asked about the other lumps as I noticed that the u/s tech only scanned one area on each breast.  The surgeon said that we will see what the results were with the biopsy and take it from there.  As I was leaving, he gave me a phone number to call in regards to genetic testing and also suggested that my two sisters check into it too.  I have an aunt who was dx with breast cancer at the age of 22 (now 42 and celebrating 20 years of being breast cancer free!),  her sister (my other aunt) was dx with breast cancer at the age of 48 (she lost her battle at age 50).  I have a counsin who was dx with breast cancer at age 42.  These three are all my father's sisters and niece.  Now keep in mind, I'm still under the impression that these were everyday run of the mill cysts.  So i wasn't sure if i wanted to take the genetic test...i didnt see a point in it.  Well fast forward to a week later after the calling back and forth to the surgeon office for the results and finding out the samples had been sent to a second lab, I finally get the results that I had ADH in both breast tissue samples and an excisional biopsy is being ordered to see if there could be something nearby lurking.  This raised a flag, and i scheduled the genetic testing because i have a daughter and i wanted to know if she was at risk in case i got bad news. I had again brought to my surgeon's attention, "Hey, what about the other lumps?"  it was brushed under the rug yet again.  I go through the excisional biopsy on both breast on July 1st, 2013.  Results came back more ADH.  I went in for follow up so that the surgeon could check out my incisions (which were fine) and I asked once again about the other lumps.  He said that he would get me in for a MRI.  I was like, ok, good at least something is going to be done.  I was standing next to him on July 23rd when he asked the receptionist to get me scheduled for an MRI.  I leave and felt all was good.  Then I realized two weeks later, I hadn't gotten a call.  I called and when someone finally called me back, they said that they would call me back with the scheduling.  Never happened.  I called again the next week.  Same thing, "You are not on the list to be scheduled,  let me get you scheduled and i will call you back with the date"...nothing.  on the third call i got really upset with them as i felt as if i was being blown off!  So i called my GP to see if she could do anything.  She scheduled me to come in the next day for a re-evaluation.  Then I get the call from my genetic counselor....BCRA1 good news...BCRA2 ???? news.  Urgh.  Along the way, my family isnt being or havent been very supportive because the C word has never been mentioned (because I dont have it) and they think im being a drama queen because i dont know what is going on, i cant get my surgeon to cooperate, (keep in mind I still had not been refered to a high risk specialist) I'm getting all sorts of weird results..im just extremely frustrated and my family is like...why?????

So I go to the doctor and i explained the situation about how the other lumps were never looked at and the problem i had with MRI scheduling.  She flips through my files and said, "I specifically wrote for you to be check for (she lists the positions of all seven locations) and they didn't?"   I said no they hadnt.  She wasnt happy.  I gave her my dna report and she made a copy.  She told me that her receptionist would call the next day with the date...where had i heard that from?

well this time i did get a date and it is this thursday 8/29/13 for the mri.  If i am going to need more biopsies, I am going to request a new surgeon as the surgeon office just  have not been able to get me together.  Well that is all for now.   I just wanted to speak on my frustration because i have no one else to speak to.  thank you ladies and sorry about the earlier post :) 

Nora_A
by Member on Aug. 26, 2013 at 5:03 PM

Wow, it sounds like you're really getting a run around.

I'm surprised that they haven't started you on Tamoxifen for the ADH. It may help prevent those cells from becoming cancerous. 

Best of luck with the MRI. I hope it doesn't turn up anything too serious. 

kcgryhound
by Member on Aug. 27, 2013 at 9:09 AM

Good luck on Thursday and keep us inform about the results.  Sorry you have all this running around and nonsense from the doctors, it can get really frustrating at times, but you have to be your own advocate, I have found, when it comes to your health care.  If that little voice in your head is telling to keep checking listen to it, if I hadn't who knows what stage they would have found my cancer at if I listened to my gyn.

2curly
by Member on Aug. 27, 2013 at 8:07 PM
I am so sorry that you are going through all that. I would be frustrated too. You do have to be your own best advocate. Keep pushing until you get the answers that you want from the doctors. The MRI should give you more answers. As for your family, no one wants to talk about cancer. Maybe they are just in denial or they are just trying to be positive for you and them. Good luck with the MRI, sending positive thoughts and prayers your way.

deesam
by Member on Aug. 27, 2013 at 8:36 PM
Go fast and find another surgeon. I'm sure you can find a good one in your area on.
Good luck on Thursday.
itsgreatat38
by Member on Sep. 2, 2013 at 10:39 AM
Well, had the mri done on last thursday. The tech had a very hard time administering the saline and contrast ink. I ended up with four areas in both arms being stuck because of my famous rolling veins...but i knew that was going to happen lol that is how my luck rolls. Because today is a holiday, i may get the results tuesady or wednesday of this week. Ill keep everyone posted
itsgreatat38
by Member on Sep. 11, 2013 at 10:54 AM

Hello ladies!  Just wanted to stop by to give an update.  the mri came back clear (phew!!!!) but when i went to a breast surgeon i had never seen before for a BE she informed me that my breast are extremely lumpy and BEs will be next to useless.  Obviously I have developed more lumps along the way (i'm guessing) in order for her to say that.  well, i asked what could be done because it's already proven that I have ADH and i want the other lumps checked out as well!  she explained to me that the only thing that could be done would be to have my breast removed but she feels that it is extreme.  Soooooooo ummmm yeah.  i guess i'm forced to keep these lumps hanging out inside of my breast for here on out.  i am so not comfortable with that but i feel i do not have a choice in the matter. 

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