Newly diagnosed and looking for info...

JLP1979

Hi there, I have been lurking and reading these boards and learning so much. I am so thankful I found it! Here is my story...

Turned 40 in July and had my first mammogram in November. Called back next day for more imaging, explanation was "this happens frequently with first time mammograms as we do not have previous pictures to compare with and density is unknown". Two days later I'm at the breast center for a diagnostic mammogram and ultrasound. They gave me the results before I left - right breast perfect and clear, left breast has a 8x8x3 cyst (will follow-up in six months) bi-rads 3, also located in the left breast a suspicious mass (looked like jabba the hut) bi-rads 4a core biopsy recommended. The following week I had my biopsy. Easy procedure, pretty significant bruising for two weeks but otherwise no issue.

Waited about a week before I heard back on the results. ALH and the mass was a fibroadenoma. I tried to get more info from the nurse but all she said was it's not cancer but it's not exactly benign (talk about confusing). She then scheduled an appointment with a breast surgeon for me to get a consult for an excisional biopsy to remove the mass and the surrounding tissue.

I have a heavy family history of cancer, mostly cervical, ovarian, liver and lung. No breast cancer.

I'm not sure what questions to ask, what I should expect, how do I get my brain to calm down? What else can they find when they send the excisional biopsy to the pathologist?

If I had a choice I would absolutely remove both breasts without hesitation. I'm done having kids and I'm not attached to them. I am a very anxious person as it is I can't imagine having to go through this every six months just waiting for them to find something new!

Sorry for the lengthy post, no one really understands and my anxiety and they all think I shouldn't be worried or upset since it's technically not cancer. Thanks in advance for your wonderful words of wisdom!!

SimoneRC

Hi JLP1979,

Have you had genetic testing done? If not, that could potentially be useful to you. Have any of your family members who have been diagnosed with cancer tested positive for any pathogenic gene mutations. Also, what ages were your family members diagnosed? Meeting with a genetic counselor may be super helpful to you.

I know this can be a tough decision to make. Personally, I am happy that I was tested and my mutation was found. It was helpful to me in my decision making process and ongoing screenings. Some other members on this site though have been unhappy with their decision to be tested.

Good luck!

JLP1979

My mother, Aunts and grandmother were all diagnosed in their 40's, my mother had multiple issues and ended up with a total hysterectomy by 42, the others all had partials. No one has ever had any genetic testing done, I'm hoping that is offered at my next appointment. I think my family history qualifies me for insurance to cover it. I did do the 23&me health testing (I know it's not what we should go by!) And I didn't have any variants for the braca gene....

SimoneRC

There are many genes aside from BRCA for which you can be tested. If for any reason this appointment does not lead to genetic counseling, please go someplace else. And with your strong family history of cancers, hopefully your genetic counseling and breast center are at a National Cancer Institute Hospital. Not all breast centers, doctors, etc... are up on the latest information. You want the best trained, academically up to speed doctors, the best pathologists, the best equipment, etc...

Good luck and please keep asking questions as they come to you!

MinusTwo

JLP - you said appointment with a breast surgeon for me to get a consult for an excisional biopsy to remove the mass and the surrounding tissue.

When is your appointment? OF course we understand your anxiety. If you can't distract yourself by binge watching TV or taking long walks or cleaning the house, call your PCP for anxiety meds.

Talk to the surgeon about what they mean by excisional biopsy. Are they just sampling the area? Or are they actually doing a lumpectomy to remove everything? Then what would she recommend next? And for the next 10 years? Also ask her about a mastectomy.

I agree about the full genetic test & counseling. It shouldn't be a problem based on your family history. And I agree about getting a second opinion at an NCI center. Please let us know.

JLP1979

My appointment isn't until Jan 14th, schedules have been tight due to the holiday unfortunately and I am no longer considered an urgent case. The nurse I spoke to when they called me said that they would remove the mass (which also had atypical cells) and as well as the surrounding tissue so they can fully understand whats going on and make sure nothing is missed? She did say there was an option for "wait and see" but the surgery is what is typically recommended for this diagnosis. Which i am totally OK with - I would rather have them remove it and known and as much as we can. Do you think with this surgery they can remove everything and all is well or does ALH mean I will always have atypical cells in my lobes? I just wish I had thought to ask more questions at the time but my brain was not working correctly while trying to absorb what she was saying. She also mentioned with my family history and lack of a cycle in many years they have to understand where my hormonal levels are before they would suggest any chemo-prevention.

Honestly surprised I remember as much as I have - the whole conversation seems like a blur. I just keep remembering her saying "It's not cancer but it's not benign"....not real reassuring!

I am in Madison, WI - I am being seen at the UW Breast Center and UW Carbone Cancer Center, don't think I can do much better than that!

MelissaDallas

JLP, GENERALLY in about 20% of the cases where atypical cells are found on needle biopsy there is an upgrade in diagnosis on excision to DCIS or invasive cancer. ALH/LCIS are kind of tricky, because they generally don't show on imaging and are incidental findings when something else is being looked at. They also tend to be diffuse and often bilateral, so no, just because ALH is excised in one spot doesn't mean there is not more of it elsewhere.

SimoneRC

JLP1979,

Carbone is an NCI. Sounds like you are in good hands and your first steps are in place. Good luck on the 14th! Guessing you will have your procedure then be prepared to wait again for the pathology report. Then perhaps testing to see if you are menopausal. Then hopefully genetic counseling/testing. My genetic tests each took about two weeks for results. My pathology was just under two weeks. Try to stay busy. You are the same person, you are just gathering more information about yourself. Deep breaths.

Keep us posted!

JLP1979

Met with the surgeon yesterday, procedure scheduled for the 29th. Says there were atypia cells found within the Fibroadenoma and then of course the ALH which is why they want to remove it and test it. Path should be back with in two to three days. Crazy fast from what I have read here. If it comes back with no cancer, I will be setup with the high risk clinic where increased screenings, genetic testing and all that will occur. If it comes back as cancer, we will discuss treatment options at that point. But like I am sure you all know he says only 15-20% come back upgraded.

Went over the wire placement and the actual removal, sounds pretty easy - assuming it will hurt more than a core biopsy. The one weird thing is he disagreed with my calling the other spot a "cyst" which is what the radiologist told me, well his actual words were "most likely a cyst", surgeon did not feel it looked like a text book cyst but also agreed with the B-RADS-3 assessment. Now like a dope I am worried about that one! He said if it had been close to the spot he was removing he would remove both but since it's on the other side and currently not suspicious they will leave it and watch it.

So another two and a half weeks before I can put this behind me....until June when the next round of mammo's and ultrasounds are scheduled!

MelissaDallas

JLP, if it is any consolation, I thought the surgical biopsy was easier than the core, and I had little discomfort following the excision.

Khakitag

I just had my excisional biopsy done yesterday and it was a breeze. My needle biopsy was done dec 19th. I was diagnosed with ADH on pathology but my two mammograms had a Birads of 4C for branching heterogenous calcs. I thought it sounded like discordant findings but my surgeon disagreed. Now waiting for the good news that I’m in the 80% that remain benign. Trying to be positive. I’m 48, and premenopausal. I also had the genetic testing done and waiting on those results since my mom had IBC at Age 40.

JLP1979

Had my excisional biopsy today. Was a little traumatic. They placed the wire using ultrasound rather than mammography, this was a long painful process, it was apparently very deep in the breast.

Didn't see the surgeon after, he spoke to my husband while I was in recovery. All he said was everything went smoothly and they will call on Friday with results.

I woke up in terrible pain, gave me some more meds and I bounced back pretty quickly. Pretty uncomfortable tonight but nothing I can't handle.... Now it's just the stress of waiting until Friday!

JLP1979

Excisional biopsy results are in - all begin findings. So resuming increased screenings and what not for the ALH. For some reason I don't feel as good about the results as I thought I would. I thought it would be a weight lifted when all I feel is "what's next".

MinusTwo

JLP - congrats on the results. Yes, it may be a questionable victory, but take hold of whatever time there is before we are hit by a bus and enjoy your life to the fullest.

AliceBastable

There are so many people here who would have LOVED to hear "benign."

MinusTwo

Well - JLP has deleted all posts, diagnosis, profiles, etc. Still glad she is was diagnosed benign.