Diagnosed 8/2218

Nicetomichu

hi everyone. I was diagnosed this week with invasive ductal carcinoma - tubular. Right breast 1.8cm mass with amorphous calcification totaling 4cm. My left breast 9mm lump came back benign. She was surprised by that so I'm scared even more now. It is well differentiated grade 1. ER+100% PR+80% HER2 status is pending but is expected to be negative. KI-67 is 5%. I am 46 with 3 children ages 25, 17, and 6. I meet with surgical oncologist tues. I want double mastectomy. Lost my husband to stomach cancer he was 41. I still get my period. I am so lost and scared. I NEED to stay alive for my kids! My understanding is that IDC tubular is not treated aggressively because it is unkely to spread. But I have to treat it aggressively. My kids already lost their other parent to cancer. No family history. Genetic testing will be done next week. Would I benefit from hysterectomy also since I was diagnosed before menopause?

nowheregirl

I am so sorry that you had to join our club. I was 39 years old when I was diagnosed with stage 2b breast cancer. Still had my period for sure and two of my lymph nodes were positive along with a 4cm tumor in my right breast.

Now it's 13 years ago and I am not a ghost. I work full time and have even done 3 overseas holidays since I completed my treatment. I am truly sorry about your husband but just because cancer took him doesn't mean it will take you too. I am sure you will be where I am now. Good luck with the appointment with your oncologist. Just remember that you can ask him/her whatever you want. No questions are silly. Don't ever feel bad for asking what may sound stupid. You have every right to get your questions answered.

Nicetomichu

thank you for your reply. Your story inspires me! I have a list of questions ready for my surgeon. My husband was stage iv initial diagnosis stomach cancer and died within 6 months. I have PTSD from that and my mind goes to the worst outcome Please doc take all of myfemale goodies. They have served their purpose

voraciousreader

nice...check out the nccn website and register. Then read the professional version of the breast cancer treatment guidelines. Specifically look for the page that discusses tubular and mucinous breast cancer. You will see that like mucinous, which is what I had, tubular and mucinous are usually considered favorable and very treatable breast cancers. Once you read the guidelines, you will see it might not be necessary to over treat your camcer. You have GREAT prognostics and should do very well. I wish you well

windingshores

You have grade 1, tubular, low ki67% and estrogen positive (100%!),  PR positive -all hopeful for prognosis.  It would seem you have a good chance of doing well.

You can have an Oncotype Dx test which will play a large role in treatment choices, and yours  is likely to be very low, which is great.

The idea these days is that there is no point, and it is even harmful, to "throw everything at the cancer." Some won't benefit from chemo and even do worse over time. You have a good chance of not having to have it.

They will probably recommend lumpectomy with radiation, or mastectomy (your choice) followed by Tamoxifen.

I had a double mastectomy but one at a time, a couple of months apart. But I am older. Docs did not want to do radiation on me. 

 I liked the Mayo Clinic book on breast cancer, which covered everything I needed to know but didn't go into so much detail that I felt overwhelmed. Good luck!

Runrcrb

nicetomichu,

sorry that you find yourself here and that your husband passed away a few years ago, leaving you to single parent your children. I know it's scary and very stressful. As much as you can, spend this first few weeks (and months) getting your diagnosis details and reading from QUALIFIED sources. Dr Google is not your friend at this point. If you don't feel that you can talk to your medical oncologist, your breast surgeon, your plastic surgeon, or your radiation oncologist (if that's in the plan), keep searching until you find ones that you can talk to. Find a friend who can go to appointments with you. My husband was in the hospital during the two months after my diagnosis and couldn't join me; I recruited a friend who took notes (and typed them up) while I asked questions and listened to the doctors. This was a huge help as you will have many times when you can't remember what was discussed. While not the cause by any stretch, I believe that the stress I had during the year prior to my diagnosis contributed to my cancer coming along when it did. I think I would have ultimately had breast cancer but think the stress I experienced (sick husband) accelerated its timing. I am 27 months post diagnosis and doing great. All the best to you during this very stressful period. As much as you can, try to take deep breaths and focus on the good things in your day rather than the cancer. I know it's hard.

Teddy88

Hi Nice:

Fellow tubular here. Just in case you have yet to see it, there is a board called “less common types” of BC — you will find many posts there regarding tubular. I found it super helpful. I will be thinking of you, and hope that you will post again and be lifted up by the caring and support on this site.

Love,

Belle

xxoo

Nicetomichu

Thank you everyone for your kind posts! I have registered at the NCCN website. I will also check out the least common BC board. I am concerned that the left lump came back benign. Research and my radiologist advised that it is common for tubular IDC to present bilaterally. I am also premenopausal and I'm finding research that having my ovaries removed gives me almost the same percentage as Tamoxifen for 5 years. I have a heart condition and don't believe I would qualify for Tamoxifen anyway. I believe the risk would outweigh the benefit. I am in good hands at Holy Cross Cancer Center in Fort Lauderdale. I think the diagnosis shock is subsiding a bit. This was caught on my annual screening mammogram. Thank God I went! I wish everyone well and will update back after my appt on Tues. Hugs to all.

Nicetomichu

I just received my pathology addendum. My HER2 (IHC) test came back Negative (1+) This was expected for tubular carcinoma that is ER+ and PR+. I meet with my surgical oncologist tomorrow.

voraciousreader

great news. I am plus 1 too and eight and a half years out

Nicetomichu

I just wanted to check back in with everyone here. My Oncotype DX came back as a 5! Excellent news. MO advised that even though tubular carcinoma is a favorable subtype, she still recommends tamoxifen for 5 years. We will then revisit at the 5 year mark about an additional five years on AI since studies show 10 years is beneficial. I will cross that bridge when I get there. I hope I tolerate the Tamoxifen well.