Just diagnosed - meet with Breast Surgeon Wednesday

ClarkBlue

After a routine mammogram on 2/15, I got the call the next day to come in for another more close look. Went in and they told me it was most likely just calcifications (on both sides) and a 90% chance that's all it was - but on the off-chance it was malignant, it would be VERY early. They ordered a biopsy the following week. I was concerned, but encouraged. I stayed off the internet as long as I could.

Biopsy done on 2/24 (stereotactic guided) on both sides. Got the call the next day - DCIS on both sides. They ordered genetic testing for the following Monday due to my age (45) and family history (mom and 2 of her 5 sisters had DCIS at 46 - thankfully all are living).

Went in for genetic testing (very insightful) and opted to get the expanded panel as well since they are always researching and finding new genetic links that may help in the future (for my 3 daughters). NOTE: I posted this on another thread, but get the extended panel - they will use the same blood sample so it will be covered. If you opt to go back a different time after being tested for BRCA gene, they won't cover it since the results of BRCA won't change, there would never be a compelling reason to initiate the testing a second time - so you might as well get it all done in one shot.

Surgeon (whom I have yet to meet with, but have coincidentally already met through a dear friend who had breast cancer about a year ago) ordered an MRI to ensure she had all the results in front of her before we meet on 3/16. Had the MRI done at 11pm on Friday 3/4.

Got a call on Monday 3/7 that the MRI had found another area right next to another area in the right breast. They had me come in the next day for another biopsy.

Biopsy done on 3/8 (Ultrasound - which was kind of cool to see the lump and the needle go into it - not to mention a welcome distraction of my thoughts during the procedure). Got a call the next day - IDC. Invasive. I asked for the size - they said less than 1cm.

I did what I shouldn't have - I did some research on IDC and freaked myself out. Up until now I was able to settle myself down knowing that even though there is a family history - they are all alive and well. AND that it wasn't invasive, which meant no Chemo or Radiation. My husband and I had agreed that a bilateral mastectomy was the best option - and after talking with my mom and aunts, they gave me insight to all sides of the decision: mom had a mastectomy on one side, one aunt had lumpectomy, and other aunt had lumpectomy and was put on Tamoxifen. It was "nice" to have the differing experiences and gain insight to help decide what was best for me. My personal feeling was that I wanted to avoid Chemo or Radiation, and the fear of recurring incidents associated with a lumpectomy. One of my aunts recently had a recurrence after 20 years and had a double mastectomy last summer. With the recent diagnosis of IDC the similarities with my family ended, and the concern of Chemo and radiation entered the picture.

I read my MRI results and found that there was a line that said, "No suspicious axillary or internal mammary lymphadenopathy is evident." for both sides, which appears to be encouraging. I did a little research and found that the MRI results are about 80% accurate - which is good, except reading on this board that would suggest that regardless of the MRI, it is entirely plausible that the lymph nodes will be positive.

I also got the call Thursday that my genetic test results were in. After the IDC diagnosis on Wed, I wasn't ready for more bad news, so I waited until Friday to call back. Thankfully I am BRCA1 & 2 negative. The aunt who had the mastectomy last summer got tested as well, and is also negative. The geneticist is convinced that there is a genetic significance involved due to the early history in my family. I have created a private FB page to talk about all of this with all of my female cousins to encourage genetic testing and get regular mammograms - since most of them are a few years younger than me (from late 20s to early 40s). It's been good. I told my girls, and our family to facilitate discussion and gain some support. We have a fantastic support of friends who are praying for me and believing that the lymph nodes are negative.

My surgical consult is this Wed - she hasn't ordered a sentinel node test yet - but my guess is that had I been diagnosed with IDC at first, she would have - so maybe that will change when I see her this week??

Trying to stay positive, and I may call my GP for a prescription of Xanax to have on hand for those days when things get tough.

This board is great - I'm looking to find someone who is on the same track as I am to share our experiences and find a "friend" to walk this through with. Although I'll take anything I can get at this point. :-)

Kicks

Before you jump into surgery, be sure to meet with your entire Team (Surgeon, Chemo Dr and Rads Dr) which have talked with each other and the Board at the Facility for an overall TX plan. It is a Team effort that gives the best outcome - not just separate Drs doing 'their own thing'.

Heathet

just diagnosed with DCIS. I'm waiting for more test results and that's the hard part. I'm so nervous and stressed! I wish I had all the answers. I'm also thinking of asking my GP for Xanax just during this waiting process. I had my biopsy on the third and my diagnosed on the 8th. My doctor says the surgery will take place anywhere between 4 to 6 weeks. I wish it was tomorrow!

ClarkBlue

Thanks Kicks - will do. I haven't seen any doctors yet - just lot's of tests. My guess is I will be talking with them after my appointment on Wed.

Heathet - I live in MI too... are you going to U of M? I'm in the Kalamazoo area.

Anonymous

Hi There

I am on a similar track of you.. I had my mammogram on 2/11 and was told at that time that they wanted to do a ultrasound as well.. Did that the same day and was told to come back the following day for the biopsy.. got the call 2 days later and was diagnosed with IDC, Stage one Grade 1. I have they small tumors in the same quadrant of the left breast. I am scheduled for surgery on March 22. I will be have a lumpectomy and a breast reduction on the "healthy" side for symmetry. I met with the plastic surgeon who will be working side by side with the breast surgeon.. I was told that the procedure is about 3.5-4 hours but still considered an outpatient procedure.

I had a blood test performed to test for the BRCA gene since I am of Ashkenazi Jewish decent.. Still waiting on these results... Also waiting for the result of the Oncotype DX test... I have a pre op appointment scheduled tomorrow with both the beast surgeon and plastic surgeon so hopefully I can find out the results of those tests.

From the mammogram , ultrasound and physical examination it appears that there is no lymph node involvement but the sentinel biopsy done during surgery will confirm that.

My breast surgeon feels that the BRCA gene test and the Oncotype DX will be in my favor ( fingers crossed). She does not think that I will need chemo, only radiation and hormone treatment since my tumors are Estrogen + ( 100%) and Progesterone + (54%) and Her2 negative by FISH.

Do you know the pathology of your tumors?

Good luck with your journey.. Once you speak with all the doctors and have a treatment plan you will feel better and things will move faster.. If you want to talk feel free to private message me at any time

PS. I too requested and received a prescription for Xanax from my primary care doctor to help with my anxiety levels....

Heathet

ClarkBlue - I'm meeting a specialist out of Troy - Pamela Johnson - she is out of Beaumont- I'm actual about an hour north of Detroit in port Huron. U of M is really high on my list for treatment - they are an excellent hospital.

ClarkBlue

Nachout818 - I just found got a copy of my medical records - quite fascinating actually. I am ER+, PR+ and HER2-. I think that it will be a higher grade due to the words, "invasive poorly differentiated ductal carcinoma with moderate nuclear atypic, poor ruble formation and brisk mitotic activity". Sounds like to suckers are multiplying fast. Also says, "largest focus is 6mm with no angiolymphatic invasion appreciated". From what I understand that means not in lymph nodes - although I know one can only know for sure by the biopsy done at surgery.

Heathet - I have friends that work at Beaumont - one is a dermatopathologist, and the other is a thoracic surgeon. You probably won't deal with them at all but Beaumont is a very HIGHLY rated facility - you are very lucky to be there. :-)

Heathet

thank you ClarkBlue - I meet with the specialist Thursday and I'm eager to get more information to move forward with my treatment. Had my MRI done today - talk about loud and I was worried I might fall asleep. They said they would have the results next week and they would get them to my doctors. I had it done at a local hospital, I was hoping to have them sooner.

ClarkBlue

Amazingly I had all of my testing and biopsies (genetic included) done and results in after 2 weeks! I'm believing that you will hear soon.

Had my breast surgeon appt today... Board is right, I feel a WHOLE LOT BETTER after that meeting. Even though cancer is aggressive, she said that breast cancer isn't a very fast growing cancer so even the aggressive ones don't grow that fast. I was concerned that I may need treatment prior to surgery to keep things in check but that's not the case. Whew! She recommended a lumpectomy which surprised me, but was encouraging. My hubby and I are still going with a double mastectomy followed by tissue expanders then implants. With my family history and talking with my mom and 2 aunts about their experiences I feel this is right for me. She was fine with that and gave me all the pros and cons just so I was aware of them, which I appreciate.

Meeting with the plastic surgeon on Monday to set a date and discuss recovery and plan.

Found out that I have a "team" of MO, RO, etc who will work in tandem on a board to discuss treatment once we get the pathology reports back from surgery.

Good news. I am encouraged

Kicks

She said " that breast cancer isn't a very fast growing cancer so even the aggressive ones don't grow that fast". All types of BC are not the same in speed of progression, Stage/size at DX or prognosis and weeks/months may not make much difference in doing TX with some. However, IBC is very fast growing (presenting/progressing literally within hours/overnight) so days are important for getting into TX. It is true that some types of BCs are not "fast growing" ( like your type), some having been there for years but not true for all who have a DX of BC without knowing the type and a lot of other related information.

ClarkBlue

Kicks, I was surprised to hear that as well. Considering mine is IDC grade3 and almost 100% ER+ and PR+ I will admit that I asked her directly about it and if I should be concerned. She said no, so that did alleviate my fears considerably. I do have a prescription for Xanax now so I can peruse this board and keep my fears at bay until I research it further.

On a positive note, I applied for my medical marijuana card today!

brandford37

Hey I also diagnosed with IDC on March 7 I'm 37 yr old with 4 kids and I'm doing my surgery April 12 I'm so nervous still in shock

Artista928

Grade 3 tumours respond great to chemo. The higher the ER the better in the sense that hormone blockers should be able to keep it's ass at bay after tx. My ER is 95%. I was happy to hear that believe it or not.

ClarkBlue

Brandford37,How are you doing with your surgery coming up?

hikerchic

I'm also diagnosed with IDC, Grade 3, with very high ER/PR. However, I do have one node positive on core biopsy. I have already met with the BS anf MO, both of whom are an awesome team and make me feel much better. I also have a high risk OB on board as I am 14 weeks pregnant now (a baby girl). The prego hormones made my IDC go crazy....so we are waiting on HER2 to determine if surgery first or neoadjuvant chemo first.

All in all, I am handling it very well except when I first wake in the a.m. I can't take anything for anxiety, so I stay busy. I have three dozen pink almond cupcakes and four loaves of banana break in the kitchen right now...lol. Since diagnosis my appetite is nonexistent...so my husband and friends are reaping the rewards.

Anyone else having appetite problems?

ClarkBlue

hikerchic - I cannot imagine what you are going through... I will say a prayer for you and your baby girl that you will both pull through this quickly, with the least amount of side effects possible and that you both will live long, healthy lives

I have found my appetite has waned, but I think it's because of the lack of sugar I'm eating, my body doesn't crave it any more.

The best thing I did to keep the anxiety down was to stay off these boards until I had all of the information I needed from the doctor. It just caused me waaaay too much anxiety reading what could happen. I am back and am choosing what to read very carefully. Everyone's cancer and body is different. This board is a fantastic resource, but it can scare the crap out of you if you're not careful 😊.

Go spend time with friends, laugh, play games, enjoy nature. It's been a whirlwind the past month and I'm scheduled for surgery next week, but I am amazed at the peace I have - which was not easy to find at first.

brandford37

Hey Clarkblue, I'm so nervous at this time all I'm worried about is the Chemo I'm praying I don't have to go true it any advice I won't have to go true it. Clarkblue thanks for asking

fgt4lfe

I am new to this site and reading these post are so comforting. Everyone amazes me on how much you share and help others. I was just dx with Invasive Lobular Carcanomia (ILC). Early stage, 1 cm.. slow growing and will see the surgeon on Wednesday 4/13. My head is spinning. I am 67 years old. My sister is a 10 year survivor and there are various cancers on my father's side. Everyone of you are in my prayers. If I've learned one thing, be diligent.

Moderators

Welcome, fgt4lfe! We hate that you have to be here, but we're really glad you found us. As you've already noticed, we are a very supportive, knowledgeable, helpful Community and we look forward to supporting you as you learn more about your diagnosis!

You may want to also post in the ILC forum, where you can meet others with a similar diagnosis.

Keep us posted on how your appointment with the surgeon goes on Wed!

--The Mods