Dcis triple negative Help please

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Frankie1
Frankie1 Member Posts: 3
edited November 2017 in DCIS (Ductal Carcinoma In Situ)

Hi all



Would like some advice on my triple negative status. I was diagnosed on December with dcis with microinvasion. Had left breast masectomy and path report came back as high grade 3 dcis, er,pr,her2 negative. Treatment of radiotherapy due next week and then no further treatment. I am really concerned that it may come back in right breast or elsewhere and as there is family history (mother colon cancer, father bone cancer, brother blood cancer). Could this be hereditary? My oncologist says I don't need any tests as its only if female close relative had breast cancer or ovarian cancer. I'm really confused any any help would be greatly appreciated.

Thank you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2013

    Hello Frankie, and welcome to Breastcancer.org.

    Until members post with their own experiences, you can read more about Triple-Negative Breast Cancer, its treatment and who gets it, at the main Breastcancer.org site (just click the link to go there).

    • The Mods

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2013

    Frankie, as far as I know, bone cancer and blood cancer are not related to breast cancer.  Colon cancer may be, but the strongest connections to breast cancer are ovarian cancer and prostate cancer.  So if no one in your family has had breast, ovarian or prostate cancer, the likelihood of your cancer being genetic is low.

    As for the cancer coming back in your right breast, that's almost never happens.  Cancer doesn't usually move from one breast to the other, and DCIS never moves outside of the breast that it is in.  You did have the microinvasion, so that means that it is possible that some cancer cells may have moved beyond the breast, either through the lymph nodes or the blood, but with such a tiny amount of invasive cancer, the risk that any cells moved beyond the breast is about 1% or less.  I had a microinvasion too, and that's how it was explained to me.  The main risk you face from your diagnosis of cancer is a local (in the breast area) recurrence and after a mastectomy, assuming that you had good surgical margins, that risk is only 1% - 2%. 

    The other risk you face is that you might be diagnosed with another primary breast cancer some time in the future.  Any woman can get breast cancer and if you've been diagnosed with BC before, the risk that you might be diagnosed again is higher than average.  But if you are diagnosed again, this would be new cancer, completely unrelated to your previous diagnosis. So the triple negative status wouldn't affect this - a new diagnosis could be completely different; it might be ER+/PR+, for example.  The best thing to do is to remain diligent and be sure that you get all your screenings done on schedule.  Even though your risk is higher than average, the odds are still very much in your favor that you won't be diagnosed again. Most women diagnosed with BC are not diagnosed a second time.  But if it should happen that a new BC does develop in your right breast, by being diligent, hopefully the cancer will be caught at a very early stage, hopefully while it's still just DCIS.  

    That's the way I look at it for myself, since I too had a single mastectomy, still have one natural breast and am higher risk because of my previous diagnosis. 

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  • Frankie1
    Frankie1 Member Posts: 3
    edited January 2013

    Wonderful to understand in laymans terms. Thank you beesie for your knowledge and replying.

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  • Ariom
    Ariom Member Posts: 6,197
    edited January 2013

    Thanks for that explanation Beesie. It helped me understand better too!

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  • Suzi_4
    Suzi_4 Member Posts: 13
    edited October 2017

    hi,

    I would like to know some more information about triple negative dcis as i have just been diagnosed in this category.

    Thanlyou

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  • Sitti
    Sitti Member Posts: 230
    edited October 2017

    Hi Suzi_4,

    Welcome, although I'm sorry you find yourself here. You've found a great place for support and information, this is a wonderful community. Just saw your post and wanted to say this is an old thread that hasn't been active since 2013. I'm not sure you will get much in way of response. You may want to start a new thread under the DCIS forum and ask your question. I was diagnosed with hormone negative DCIS although it was not tested for the HER2 status. (HER2 is not typically tested with pure DCIS although I have seen where some places do test it (actually would have liked to known my HER2 status).)

    I'm attaching a link for information regarding DCIS which I hope will be helpful for you. It may answer some of your questions. If there are still unanswered questions be sure and ask as I'm sure there will be lots of people will to try and answer them.

    https://community.breastcancer.org/forum/68/topics/790992?page=8#idx_232

    Edited to say: Triple negative DCIS is not the same as Triple negative IDC. If your DX remains pure DCIS the treatment is different from Invasive Ductal Carcinoma.

    Wishing you the best.

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  • LeeAllen09
    LeeAllen09 Member Posts: 3
    edited October 2017
    Hi Suzi, I too have TNBC! Diagnosed Dec. 10, 2016. It is a more aggressive cancer. I found the lump doing self exam. I'm now 68 years old. Surgeon advised chemo first to shrink tumor of 5 cm. as I'm very small and had not decided yet to do lumpectomy or mastectomy. Given I'm so small n was a little more thinking lumpectomy n Chemo dr. Consult agreed yes start Chemo. I started out losing weight before I found the tumor right breast and I'm right handed. TNBC also has a higher reacurrence. Onco dr. Also said same thing. 5 year survival for TNBC is 77 % but unfortunately on my biopsy I have a proliferation marker (KI-67) which gives me a 30% lesser outcome which Puts me at a 47% for the 5 year survival rate! Plus I was a smoker for almost 50 years. PET scan was great, clean everywhere else. I'd tell you to do lots of reasearch. I'm doing some Natural things that I've found in my research to have a lot of great outcomes that I personally believe in. I did tell dr I was doing other things. He didn't like it but Im doing them anyway. Could only do 5 out of 8 chemo as I got neuropathy bad in my hands n feet. Plus very red, finger tip swollen n very painful. Next was surgery! For me after research I decided NO radiation for me. I'm 5 foot 2 inches n kept losing weight. I got down to 89.0 lbs. so I'm skin on bone pretty much. I eat all the time. Constantly trying to gain. Back up to 93.0 lbs. Hurray! Had surgery right mastectomy on May 9, 2017. Did great with that n 4 hrs. After I was back up in a room I started exercising n walking the halls. Chemo dr. Wanted me to start chemo pills after healing from surgery (xeloda) 2 weeks on 1 week off for 8 cycles. That went worse than the Chemo thru my port! Did ok the start of the first 2 week cycle but like 4 days into the second cycle I got the HnF syndrome 5 days into the second cycle n started peeling around most of my finger nails red n swollen couldn't see any lines in my fingertips at all. They stopped treatment for a week They started the xeloda back up but after 7 days I stopped n called dr as it got so much worse with the peeling and my feet as well plus so very painful onco dr said I could not take any more treatments!. So I only completed 1 n 1/2 cycles out of 8. He said I was done as there was no other treatments for my TNBC! Now my problem is I can only get my right arm raised going up in front of 125 degrees, instead of all the way up by my head. N to the side only 90 degrees to shoulder level I've been in PT for over 3 months now n my Pec muscle is trapped in the arm pit area plus my armpit looks deformed. It looks like a very little cave. I can't shave in that arm pit. Plus it's very painful in my arm especially in the bicep area with swelling. My therapists has never seen this neither has my surgeon or the other surgeon. My therapists even with my permission sent pictures of my arm n chest not my face to a few other therapists to see if any of them had any patients with this problem n the answer was NO! Surgeon I saw yesterday is sending me to an orthopedic dr. To see about possible surgery to release my pec muscle. I wish you good luck with your treatments.
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  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    Suzi, please note Sitti's post, triple negative DCIS is NOT the same at TNBC (LeeAllen was talking about TNBC). I had triple negative DCIS and am over 14 years NED.

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  • Suzi_4
    Suzi_4 Member Posts: 13
    edited October 2017

    mt woman dcis high grade ductal carcinoma in situ pure with er - pr - i had lumpectomy 4 weeks ago and not having radiology only my doctor wont me to having tamoxifen for 5 years I'm 44 years old i dont thing tamoxifen is good for me with pr neg and er neg thanks

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  • LeeAllen09
    LeeAllen09 Member Posts: 3
    edited October 2017

    To everyone! I also need help if anyone out there has gotten a trapped Pec muscle in the armpit area after there mastectomy? My PT therapists has been working with women after their surgerys for lymphdema n all problems related to cording in the arm, problems after radiation etc for the last 12 years. She has never seen any patient with my problem neither has the other therapists who has many more years in the same field. Neither surgeon in the office I went to has ever seen it. My therapist with my permission even took pictures of my chest n armpit area to send to another therapist n she had no clue. I cannot raise my arm all the way up forward norm raising it to the side is worse n can only get it up to shoulder level. I have gained both ways as it was much worse. It's very painful! It seems as I've hit my limit n not gained for the last about 6 weeks n that's when the pain changed n has gotten much worse plus my shoulder is now hurting n my arm in bicep area has swollen. It feels like since I've hit my limit on range of motion that n trying to stretch it more n it's causing more problems in my shoulder now n arm. Please if anyone has heard of this trapped Pec muscle in the armpit area I'd appreciate any info about it






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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2017

    Hi Suzi. If you are ER and PR negative I don't know why your doctor is suggesting tamoxifen. Can you get a second opinion?


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  • Linwentz
    Linwentz Member Posts: 133
    edited November 2017

    Susie, I am thinking like Georgia... I would question the dr about Tamoxifen. Everything I have read states that ER/PR - women do NOT respond to any hormone therapy -- which is why being negative is a worry. Make sure you understood him/her correctly or get a second opinion

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