More tests and waiting

Donotfear

I am new to this community and just need to vent. I had breast cancer at age 36 in 2005. This past month has been full of tests. I had mammogram on April 22nd.Got a call back the next day that a spot had calcificatios that was not near my previous cancer. I went back April 24 for more views and an ultrasound. This was on a Friday. 15 minutes after I left the hospital they called with an appointment for first thing that Monday to have a stereotactic biopsy. I asked that morning if the calcifications showed on last years mammogram. In was told no. My BS told me two days later that it came back benign but a review board might decide to look at more of area . The review board decided not to. He also said just be happy its benign.I didn't feel warm and cozy when I left his office. In the meantime my right breast was really sore and I reached up and found a lump.When my BS returned my call he blew me off saying he had just seen me and call back in a week! Luckily I had an appointment with my oncologist this past Tuesday and she got me right in yesterday with a different BS. ( I saw her once 7 years ago and liked her). She showed me the last 3 years mammograms and showed me there WAS something starting last year!! After I had been told there wasn't.She also informed me they over shot the marker during biopsy. She is not convinced that its just fat necrosis because there has not been trauma in that area to cause that. The lumps are pooled blood from stereotactic. So she said it was "bugging" her that she doesn't have an answer as to why it is shadowy around the calcificationa. So I have to wait 2 mos for a MRI with contrast because my breast is so inflamed. If they did one now it would light up everywhere she said. So after hearing benign I'm still not in the clear.I feel something sn't right .10 years ago I had a stereotatic and they biopsied the wrong spot and didn't tell me. My primary did .. They were going to make me wait 6 mos and recheck me, luckily the breast specialist said let's take it out and see.And it was breast cancer that took 4 mos to diagnos because they thought I was too young and tried to take the wait and see approach.So I don't trust the stereotactic. And am once again playing the waiting game.I guess you are never in the clear no matter how long its been. Thanks for letting me vent.

Meadow

Donot fear, I am so sorry you have gone thru all this. May I ask what treatment you had after your diagnosis in 2005? Hang in there, I can tell you are a tough little thing!

Donotfear

I had chemo. AC cocktail. Then radiation and 5 years of tamoxifen in 2005. I was ER+. I am in surgical menopause now because I had a complete hysterectomy with ovary removal last July for complex hyperplasia with atypia.Luckily it was all precancerous after pathology was done.

vlnrph

That is quite a story, donotfear! I received misleading information from radiologists at my community hospital which caused me to transfer my care to an academic medical center. Sounds like that second breast surgeon is a keeper. I like to see the actual scans also, not just read the imaging reports.

With the original diagnosis at such a young age, has genetic counseling/testing been suggested to you?

Donotfear

Yes they talked to me years ago about genetic testing,but I didn't qualify. My new surgeon said that a lot has changed in 10 years and that I now qualify because the criteria is different and more family members have passed. My dad just passed away in January from tongue.larynx cancer.So if I find in the next round of testing that I have cancer again then they will do testing.

KBeee

Will she just do a surgical biopsy? When I found my new lump, they thought it was nothing, but my PS agreed to take it out for my peace of mind. Surprise, surprise, it was a recurrence, which we found early since I insisted they address it and get rid of the lump. Do not be afraid to advocate for your self. Best of luck.

AnewBeginning

Donotfear

I was in the same boat as you and knowing what I know now I would insist on "surgicaly removing" whatever they are seeing.

Had I done that back in 2013 I would not be here as stage 3a because biopsies came back negative when Mammo picked up Highly suspicious for malignancy! My BS just decided to go with biopsy instead of recommending removal especially because 4 years prior I had BC. Cant go back to what was but now dont trust biopsies at all. I hope you get good report but I would also get a second opinion again

Donotfear

Update. Had MRI with contrast on rt breast last Friday. BS showed my husband and I the spot. It started back in April with shadowing around microcalcifications then ultrasound was inconclusive and stereotactic came back as fat necrosis, and because of them hitting a vein during stereotactic I had to wait 2 mos for the MRi that I just had. So the contrast dye gathered at the suspicious spot. She said "it has to come out". She said when its not cancer typically the dye is in and out quickly and when it is cancer it tends to stay. In my case it dissipated slowly, so she can't wait if it is or isn't caner. Once again I'm one of those cases that's not definitive from testing. My whole life that's how my medical world has gone. Same as last year with abnormal pap that pathology showed invasive hyperplasia with atypia so I had complete hysterectomy with ovary removal because of my BC history. So anyway my surgery is scheduled for August 21 to remove suspicious area. And because they put the marker in the wrong place during stereotactic I have to have a guide wire placed first. And those are painful! I had one with my first round of BC in 2005. Hurts worse than the surgery because you are awake for it and no pain meds. Ugh! Thanks to all for listening.

lekker

Donotfear - I'm sorry you're still dealing with this. If you are concerned about the wire placement, ask if you can take some meds beforehand - either an anti-anxiety like Valium or Xanax or a painkiller. There's no reason for you to have more pain than absolutely necessary. I hope it goes well and you receive good news soon

Donotfear

Friday is my surgery. They moved the time to first thing in the morning. Then I have to wait 3 days for patrology. Let's pray after 10: years its not back.After all these mammograms and ultrasound and MRI I still don't have an answer.So she is going to remove the suspicious tissue. Wish me luck!

patriciahurtado

Good morning, good luck donotfear. I will pray and send positive vibes (())).

Well I had my implants place in 2 months ago. Now I have 2cm lump under my armpit. I also felt a small lump right above the lump. One is hard the other one feels like a small pearl inside my skin. I don't know what to do. I went to my Oncologist and she send me for a pet scan which my insurance did not approve. My plastic surgeon wants to remove it. The doctor that had removed my tumor is no longer my doctor she moved to another. State. Now I'm not sure who to see. I'm also waiting on my oncologist to see if they approve a CT scan. I'm sick of thinking I'm sick again.

Donotfear

Thank you for your tthoughts. I hope you get answers soon as well. Best of luck!!

leger

You are in my thoughts and prayers Donotfear ! You got this, whatever it turns out to be.

vlnrph

Hi donotfear, let us know how your procedure went! Now you have a long weekend to wait for pathology results. Do you have something special planned in order to distract yourself? Hope the weather is nice in Maine. We were at Acadia last year on vacation. Had fun touring lighthouses and eating lobster.

For patriciahurtado, perhaps the insurance would prefer you have a "cheap" ultrasound prior to the more expensive PET scan. Maybe CT will provide enough information to establish a diagnosis and/or treatment plan. MRI could also be an option (I have successfully been approved for that following initial denial by going to an appeal committee and pointing out the error in their analysis of my case. Of course, that delayed my appointment for two months but did turn out OK in terms of no disease detected)

Don't give up - you deserve to receive the coverage you paid for, not to mention proper follow-up...

patriciahurtado

Donotfear hope everything is well... I got approved for CT scan for Thursday. Let's see what happens negative for both of us!!!