Confused, stressed, Now what to do?

Kpsd1968

hello, I am very new here. Looking for advice. Last year in March I found a “lump” in the left breast. My regular dr sent me for a mamm. That showed I needed a ultrasound with a radiologist. Yep, I have two masses, hypoechioc masses, Birad 3. Followup in 3-6 months. Well, life had work got in the way literally and I forgot.

Three weeks ago i ended up in the emergency room with a cardiac issue. They ran blood work. My d dimer is highly elevated. They thought it was a pulmonary embolism. No. Cardiac is now fine. Followup with my dr later that week. He recommended a followup of those two pesky masses.

Monday of this week, I got to the ultrasound where the tech could see and feel 4 issues on the left and 1 on the right. She went and spoke to the radiologist and he sent me to the mammogram and to return to him so he could do a ultrasound himself of those areas.

After all was said and done that day, his words were this “ the masses are oblonged and smooth, have your dr followup like usually yearly. Anything new, call your dr, no worries.” I asked if both the mammogram and ultrasound showed these masses. He said yes.

I thought for sure I was on cloud 9. I had cervical cancer in 02, and my cousin passed from breast cancer 5 years ago.

The next morning, yesterday, the secretary for radiology calls me and says after further review, I needed a bilateral breast mri with contrast ASAP. It needs to be done in the next 24 hours. She wouldn’t answer any questions. An hour later my dr calls and says he spoke to the radiologist and he had found some “alarming” things and I needed the mri now! About an hour later this was scheduled for 7am this morning.

I left the hospital 2.5 hours later and within a hour, my online patient account had a notification. I logged in to find my “urgent mri “ reports.

States, the “ultrasound and mammogram visualized hypoechoic masses in the left breast are not visualized on mri images. Followup in six months for stability , birad 3. No mri findings to correlate with multiple bilateral palpate exercise abnormalities visualized on ultrasound and mammogram. Further evaluation of true persistent palpable abnormalities should based on clinical findings.

Now what? I haven’t recieved a call from anyone to discuss but if and when they do, I’d like to know what if anything I should be asking for. Any advice, greatly appreciated. Thank you.

Georgia1

Oh sweetheart that is so maddening and stressful! That sounds like they're saying everything is fine, so try not to worry too much. But if I were you I'd request copies of all of the reports (mammogram, ultrasound and MRI) for your files. And if they call you to discuss, I'd ask what they think the masses are - maybe fibroids? And I'd quiz them to be sure they are solid and not liquid; cysts are "squishy" and not of concern. My best to you.

edwards750

I agree with Georgia. Get copies of everything. It does sound like they just want to monitor what’s going on. Definitely do that.

Diane

Beatmon

And after you get copies, put them on the djmammo thread for volunteer Radiologist o help explain in normal language.

Kpsd1968

ok, so a lot has happened since I posted. I did get last year/this year copies of my ultrasound & mamm.and mri. Unbelievable, the wording is identical for this years us and mamm. 5x5x2 from last year and a new 5x5x3 on the left breast found. I waited for my dr to call with the mri results, he didn’t. Two days later i called them. I demanded he release my reports so i could see them. My dr said everything was good, nothing to worry about. A few hours later, i get a call sending me to breast cancer doctor.

I can not make this stuff up.

I go to my appointment and another mass is found in the left armpit area. (This one is sore) This doctor is reaching across my body, she’s on the left, trying to do an ultrasound and trying to touch ultrasound machine on my right side. She says- i cant find them (the masses on the left breast) they must have gone away. (All the masses that have shown in two years have disappeared?) I really cant make this up. She says they must be fatty tumors. But ill have the radiologist go over the scans again. I then show her where they are and she actually feels them.

In the mean time i have waited 2 weeks for something from someone!

I emailed this breast cancer doctor and ask her if the hypoechoic masses that were found in my neck 2 years ago 7mm in size on the lymph and were at that time “somewhat stable” and then last years mass (left breast) and then this years multiple masses (both breasts) are all correlated? I ask her if a biopsy can be done. I also asked if anyone was looking at the whole picture.

I guess she got upset. She emailed back and told me to go back to my regular dr for the masses in my neck, and if i was experiencing anxiety or worry to get a second option. Yesterday she called and left a voicemail- yes like i thought, fat necrosis. Btw- never taken an injury, ever! To my tata’s And my implants are 9 years old.

I had already called another hospital and asked for a second option. I sent all my records to them for them to review. More money but thank god for good insurance.

I recieved the call today to go to the cancer center tomorrow morning at 9 am. They looked at the whole picture!!!

Georgia1

Good for you for being proactive. I hope it's nothing and I hope you get all of your questions answered.

Kpsd1968

Frustration, pure and simple. I honestly can say I am so thankful or so many women posting on here with their experiences. I know I am not alone with all this. Sorry about the length, but someone out there has to be going through what I am and could possibly have advice please.

The first cancer doctor told me by voicemail that these solid masses 12’ And 11 o’clock were fat necrosis. The second hospital I went to for a 2nd opinion found a new third solid mass at 9 o’clock. She scheduled me for a ultrasound live view with her radiologist. I told her about the arm pit area and my shoulder blade hurting, she felt the collarbone lymph nodes on the left being swollen and little tiny hard balls, I told her about the smelly night sweats that have my sheets stinking. I mentioned the searing pain in my left breast where these masses are at. I told her about the right side stinging pain where they can feel a lump up by the armpit. I told her how tired I am. I even emailed her and told her my mom and my aunt are tp53 positive.

The day of the us, the radiologist says she doesn’t think it ca because the mri didn’t show anything. She has my year prior and feb. 18 us & mamm Images pulled up to compare. The new mass at 9 looks like a camel toe. It’s split on one end. The radiologist and my 2nd opinion dr in the room together said that biopsies were not preferred and if in 6 months they had found cancer they would still have time to treat it. They said they would repeat the us in 6 months. When that wording came out, I shut down and couldn’t leave soon enough. When I got home a told my frantic husband, he became furious. He was mad because the first cancer doctor I went to told me that I had fat necrosis, now this radiologist says, no...they are definitely solid masses. He’s mad because my 2nd opinion isn’t a dr, she’s a nurse practitioner. He’s mad because of the statement if it is cancer in 6 months, we will have time to treat it. He’s mad because he has literally watched my health failing me for 4.5 months and we have nothing to go by.

I called the nurse practitioner back the next day, sobbing like a little baby and asked for my radiology report. My husband wanted to see it. The receptionist puts me through to the nurse and I tell her that I’m upset and so is my husband. She tells me that I have a right to ask for the biopsy. I didn’t know I could. And the next day it was scheduled for two days later.

Because these solid masses 12 o’clock 11 and 9 o’clock are directly on the breast implant and because I have hardly any fat and dense breasts, the two radiologist performing the biopsies told me they were not comfortable performing it and would probably back out during the procedure. They were able to get the core biopsy samples at 12 o’clock and 9 o’clock. I could tell them when they were exactly on the masses, just that spot was extremely painful. Same kinda pain I feel everyday, it’s just that they could induce that pain was mind blowing to me.

I get a call today from the nurse practitioner, she says that the 12 o’clock is fragments of fibroadenoma and the 9 o’clock is fibrotic benign breast tissue with focal cysts.

My question- wouldn’t the bilateral mri with contrast have shown this? It didn’t. It didn’t show anything, not one mass or cyst. All the other signs and symptoms do not correlate with fibroadenoma. I haven’t had a monthly problem in over ten years, I had a complete hysterectomy due to cancer. The annoying stinging sometimes takes my breath away pain has been here for 4.5 months. I have had the first of these masses longer than that with no pain. Only the first us/mamm in 17, then the followup us/mamm feb 18 showed these masses. The 2017 mass grew slightly. The feb 18 tests showed the new 12 o’clock large solid mass and then last weeks us showed the new 9 o’clock.

I don’t want to tick off yet another doctor by asking too many questions, but is it time to just live with this failing health at 49? There are things that have come up; like my right breast has a focalized pain around 10 that will not go away. This is new since last week. Do I even mention it? Should I push on because deep down My gut is telling me this is not normal....

KBeee

You've been through a lot. Very frustrating. Did they give you any reason for the nodules you feel in the clavicle area? Has anyone done imaging on those, or on your axillary area???

Kpsd1968

no, she left a vm about doing a ultrasound that day they did the live view with her radiologist but that was not done. She also was have put in an order for genetic testing two weeks ago and this hasn’t been done yet either. She wants my mother and aunt to get their genetic tests from 14 years ago when my grandfather was passing away from cancer. The reason they were tested is because everyone on my moms side has died from either lung, brain, lymphoma or non Hodgkin. My dads side has a lot of lung, breast and colon ca.

I don’t know, there is just so much more; like my left hip, my left chin and my left wrist hurt( only the inside close to my body) and has been for 4.5 months. This is definitely not normal. I’m not sick, no injuries. I told my reg doc about it and he said he could throw me into physical therapy for my knee. It’s not my knee. It’s the stinkin bone. This is what I mean about my health failing......left side.

I’m not a hypochondriac. Had not been to a dr in a year before all this. Stuff is just going wrong and not right the last few months. Ug!