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Anyone diagnosed with Bilateral IDC?

paisley2916
paisley2916 Member Posts: 55
edited January 2018 in Just Diagnosed

Happy New Year everyone! I'm 42 and recently got diagnosed with bilateral IDC, Grade 3. Waiting on lymph node biopsy results right now, but has anyone else been diagnosed with breast cancer in both breasts right when diagnosed? I have two areas in my left breast - larger mass is 4.3cm and microcalcifications that came back positive for cancer. There is also a non-mass enhancement that is big - 7.4cm x 10cm. The right breast has something in every quadrant including a non-mass enhancement that covers a "large portion of the breast". The right breast was also biopsied and came back positive for cancer. Lymph nodes on both sides are suspicious and were just biopsied last Friday. I had genetic testing done - but that will be a little while before I get those results. I'm er+/pr+ and HER2-. This has been just such a shock - I don't know one person with breast cancer. I never in a million years thought I would get this - no family history, breastfed two babies, I'm still young....I'm terrified that it has already spread to other parts of my body..... Anyone else out there with a similar diagnosis? Is this rare to have it in both breasts, so widespread at time of diagnosis? My MRI summarized it as "Extensive Multicentric Disease in both breasts". Scared....

Comments

  • peregrinelady
    peregrinelady Member Posts: 416

    Hi Paisley, I did not have bilateral BC, but I did a search and there is a thread called Bilateral breast cancer. It is slow during the holidays so you might want to go to that thread and read about others with your diagnosis until someone responds on this one. Best wishes in your treatment and recovery!
  • chronicpain
    chronicpain Member Posts: 217

    So sorry you have joined us. From your other posts it looks like you are set up with a good treatment team.

    According to this synopsis, BC in both breasts coming up at the same time is uncommon, more women get a second BC in the other breast at a later date. Prognostically it may be better to get both at the same time rather than one at a time

    https://www.ncbi.nlm.nih.gov/pubmed/8677043

  • Gully
    Gully Member Posts: 24

    Hi Paisley so sad you must join our little club...but yes I was diagnosed with synchronous bilateral bc at the age of 45....they say it is rare like 2 or 3 % at diagnosis I, like you have no family history or any of the other factors linked to a higher chance of incidence. I had genetic testing done that screened for about 42 different genes that were all negative. Reason for two cancers at once? Rotten luck! But that being said I would much rather deal with both at the same time rather than one now and one in two or three years. As you can see by my stats I will be five years out from diagnosis in a couple of weeks and doing well. You are in the scariest part of this whole ride...know that you are not alone and that you too will come through treatment. My treatment plan was based on the "worst" side. I did BMX, and chemo but no rads.... I will however be on hormone therapy for 10 years. I remember when I was dx that I kept focusing on what I did to cause my body to turn on me like that...I wanted a reason so I could fix it....I was just so mad!!! I stayed mad... probably for a year......I found it easier just to get through one day at a time at first and try not to worry about next week or next month. Once you get through all of the testing and start with your treatment plan you will have less anxiety and then will change over to fight mode. Hang in there! Please keep in touch and Please accept these (((HUGS))) You can do this!

    Gully


  • paisley2916
    paisley2916 Member Posts: 55

    Thanks for the replies. This site definitely makes me feel like I'm not alone! Gully, thank you for your words of encouragement. Especially the part about changing over to fight-mode once treatment starts. I've always felt like I am a strong person, but this diagnosis has me doubting myself. I feel scared and vulnerable and I hate it. I think you are right though - I think I will get into fight mode once treatment starts which makes me feel a little better. I'm ready to get started. The plan as of right now (after talking to my BS) is to do chemo first, then double mastectomy. As someone who HATES to take medicine (I'm always sensitive to side effects), it's going to be extremely difficult for me to do the chemo knowing it is going to make me feel sick - when I feel perfectly healthy right now. I think that's one of the things I'm struggling with. I feel fine. If I felt sick and had to go through treatment to feel better, it would be easier. But I feel fine and I have to do things (chemo,surgery) which will make me feel bad to get better. Cancer sucks.

  • legomaster225
    legomaster225 Member Posts: 356

    Paisley, I'm a puker! I was terrified that chemo was going to kill me because I would puke to death, or from not eating for 6 months. Neither of those happened! I went in expecting the worst, and I did not get sick once. I was never even nauseous. They have so many meds that help that you will get through it and this board is full of tricks to help with side effects too. It is not fun by any means but it is doable. Once you have a plan in place you will feel a bit more in control. I too felt fine (physically) before starting chemo. Its hard to deliberately make life miserable. There is so much support in this community, you never need to feel alone. Hopefully, you will get your results and your team will determine the path forward soon.
  • legomaster225
    legomaster225 Member Posts: 356

    image

  • summerangel
    summerangel Member Posts: 182

    I had a similar experience, but luckily had grade 1, low Oncotype tumors on both sides so escaped chemo. I didn't know anyone who had breast cancer, either, and I was very healthy.

  • I had bilateral breast cancer as well. Both spots on left and right turned out to be breast cancer. I was tested genetically and negative for 34 cancer causing genes. Breast oncologist at City of Hope told me it is rare and typically indicates hereditary cancer.

  • paisley2916
    paisley2916 Member Posts: 55

    Well, I got my lymph node biopsy results back today and they were both free of cancer. I am super relieved about that! My BS said to talk to my MO on Friday about chemo before or after surgery. I'll be meeting MO for first time on Friday. I'm looking forward to getting started with treatment - tired of all the waiting with all of these tests. How soon after meeting your MO did you all start treatment - port, chemo, any other tests needed? Do they normally do more bloodwork to determine the types of drugs needed for chemo, or do they usually have that in mind based on all of the test results so far? Thanks for any input!

  • paisley2916
    paisley2916 Member Posts: 55

    Peace, hereditary cancer - did your family members have breast cancer? Not one person in my family has it....I'm still waiting on my genetic testing results. Probably will be another two weeks for that.....