Triple neg metastatic new girl

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tgilliam
tgilliam Member Posts: 3
edited August 2018 in Triple-Negative Breast Cancer

Hi everyone,

I'm a triple negative girl, with nodules in right breast and nodes in right axilla. My oncologist originally staged me as Stage 2. Now, after a PET scan and biopsies, it has been confirmed that nodes in my right groin are also cancerous. Doesn't this make me stage 4 now or for some reason, still stage 2? I know I need to get this info from my Dr. but I haven't spoken with him since I learned the new dx. I spoke with his NP and she wouldn't stage me. How many of you have it metastasized to just different nodes, but not yet other body parts?

And what about these pitiful survival rates I read about? I don't see many 5 year survival rates out there for triple neg folks. I mean, the internet can be helpful and also cruel, but still, I don't see much to look forward to. Now the thoughts of being Stage 4 make me less hopeful.

I have a 9 year old daughter and 13 year old son. I am a single mother.

I've had my first chemo treatment. I still have my hair. I'm trying to find anything to grab on to, to make me feel like my chances are good.

Any encouraging stories out there?

Thanks

Tif

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  • Jojobird
    Jojobird Member Posts: 203
    edited June 2017

    Tif,

    I am so sorry you have to go through this. This board is a source of great support and I hear you on the TNBC stats - it is scary, and Google is not your friend. If it's any comfort, I was diagnosed last year with TNBC stage 3C with 21 lymph nodes, all cancerous, and after treatment I am NED as of December 2016. Remember that most survivors don't hang out much on message boards after they heal -- they are busy living their lives. So, they are out there, just not here. And new treatments/trials are coming out all the time. TNBC is a hotbed of research, too.

    I also know of two metastatic TNBC women in my support group/s who have lived past the five year mark, with no increase in tumor size/spread, so yes there is hope!

    I can't answer for the diagnosis, but cancerous lymph nodes elsewhere in the body would indicate further questions.

    I also have a tween child and know the fear that comes with parenting when you have cancer. Hugs to you. Take things one step at a time and keep us posted.

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  • Sheliahm
    Sheliahm Member Posts: 32
    edited June 2017

    Hello tif.

    I'm sorry you are going through this. My situation is a little like yours. After my mastectomy I had a recurrence with nodules on the breast and nodes in the superclavicar area. I was considered 3c. Now I'm waiting to see my onc because some serious activity on the opposite breast. I'm actually.going to ask for a scan to see if any more nodes are involved or distant mets. So although our situation isn't exactly alike I know what it feels like to figure out what stage you are at. I did decide to stay off Google. When I was Diagnosed I was already planning my funeral. And although I'm not ned I plan on fighting until I can't anymore. Good luck with everything tif and keep us posted.

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited July 2017

    i am newish at the stage IV state. Just wanted to say hi and hope you are hanging in there.

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  • tgilliam
    tgilliam Member Posts: 3
    edited August 2017

    So, time has passed since I first posted. The node in my groin was removed and was indeed breast cancer, so this made me a Stage 4....triple neg. My genetics testing came back normal, so no BRCA issues. I've finished my 4 treatments of the red devil and this Friday, I start Taxol every week for 12 weeks. I hear it's not supposed to be as bad. My hair started coming out after the first treatment so my mom cut it off for me. My oncologist and I, neither one feel any masses in the breast anymore, so we know chemo is working.

    Now oncologist and surgeon are not saying that I should definitely have mastectomy. AT first they did. Now they're saying it's my choice. This makes me feel as though they're really saying, "Hey, the cancer will come back so you might as well not go through any surgery."

    Even if I do have the mastectomy, I worry that the cancer will return, but not have breasts to go to so it will go to my brain or lungs. I certainly don't want THAT!!! Makes me want to leave the breast as pawns.

    I just wish we had a maintenance drug out there for us once this is all over. Is anyone hearing of a maintenance drug for us?


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  • weimlover
    weimlover Member Posts: 39
    edited June 2018

    Today I am officially a TNBC metastasic new girl as well. This is the club I never wanted to join. Is this all of us there are here?

    I was stage 1 no node in 2016 bmx no chemo no rads. I’m now stage 1V, lymph nodes and bone Mets in my sacrum and just found our today a tiny speck in my brain.


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  • tgilliam
    tgilliam Member Posts: 3
    edited August 2018

    Wendy, I saw your post and that you deleted it. Listen, immunotherapy has shown to be very promising for triple neg girls. Keytruda and Opdivo were originally great for lung cx but they started trials on breast cx and have seen great results. Has your Dr talked to you about this? If you need a friend, I'm still here. Send me a PM. xo

    Edited by Mods to remove personally identifiable contact information. Please do not share your contact info on our publicly searchable boards; you may share this info in Private Messages.

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  • Kcan
    Kcan Member Posts: 25
    edited August 2018

    hi everyone,

    All your experiences have been the most beneficial and far more hopeful than most sources. Thank you for posting.

    My mom was diagnosed with stage IV tnbc with a 1cm node in her lung. This area was suspect for nearly 6months and we were told most likely cancer except it was too small to biopsy. Now we are to have a bone scan and a ct scan of her liver, abdomen, adrenal gland.

    My mom just turned 62 and her oncologist did not seem....hopeful. I Don't know what to think. I'd like to get a second opinion I'm just not sure where to turn. We live in Oshawa Ontario.

    Anyway, I guess just looking for similar stories, feeling defeated. Thank you all for your time and sending you all peace, health and strength!!!

    Katherine

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  • My_TN_life
    My_TN_life Member Posts: 6
    edited August 2018

    Hello I'm very new here but looking for advice and to share experiences. In 2015 I was diagnosed TNBC about a stage 2 did AC+T, lumpectomy then radiation while taking Xeloda. The AC shrunk things a lot I almost wish I had done an extra round but you are not allowed because it can be hard on your heart. The Taxol did nothing for me it started to regrow up into my super clavicle area. I decided to do lumpectomy and axillary disection. Lots of positive nodes clear margin on my breast. If I could go back I would have continued the Xeloda after radiation as I found out later in life Xeloda worked well for me low side effects maybe I could have snuffed out the little leftover cancer buggers. But I did not. I believed I was cancer free for about 3 months. Then Gemzar/Carbiplatin helped a bit but really harsh. Then More Xeloda which shrunk everything for 8 months it was wonderful! 2 different back to back trials no good for me. Then Halaven 5.5 rounds. And it's progressing again so I'm in transition and not sure what to do next. Just know there are hundreds of Chemo out there and trials don't let your insurance stop you from getting what you want. I want a trial and I'm going to find one because I will not give up ever! I'm 3.5 years in, lymph nodes and now soft tissue infiltration. I'm glad I made the choice to not get a Mesectomy because that is where my cancer is other the lymph nodes. But also its painful and ugly so I have my moments of wishing I had had a mesectomy. It's a tough decision you just do what you think is best and stay positive because we are strong so strong!!!

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited August 2018

    I’m also stage IV TNBC mets to brain and lung (maybe...3 spots too small to biopsy or get clear readings). I have 2 tumors in the one breast that are a recurrence and I definitely struggle with just wanting them gone. I did conservation surgery with lumpectomy the first time around and I still don’t know how I feel about it. On one hand I’m glad the boobs are still there as pawns and an easy way to check what the cancer is doing. On the other hand the lumps are painful and you can see them if you know they are there...they make me self conscious and having to interact with the cancer physically each day is hard (feel them in my bra, seat belt, ect). Hopefully we find a treatment soon that will get things stable or shrinking as long as the brain stays clear. I’m on an opdivo trial, but am on hold due to a bad reaction. Last scan showed tumors grew 1cm after doing 3 infusions...don’t know what to think but hopeful a few more rounds work. It’s tough since TN feels always like a gamble

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  • My_TN_life
    My_TN_life Member Posts: 6
    edited August 2018

    Hang in there Parryd1 I just talk to my Dr he says there is always something new! It is hard for TN its all like shooting in the dark and pray we hit the target. He has a trial for me I'll know more next week but I'm shocked because my other Dr whom I was seeing for chemo said he did not know of anything. I've learned having multiple Dr's is important, for all of us!

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited August 2018

    TN,

    Yes! More brain power :) I’m very hopeful because of all the new research and treatments that seem to be coming our way! So glad you found a treatment I’ll be praying it works well with minimal side effects. Have you heard of tumor boards? My onc added me to this brain met tumor board where all the brain doctors share knowledge and review your case each week to help determine the best coarse of action. From what I understand it’s doctors around either the state (I’m in CA and go to UCSD for treatment so it might be their network) or country that teleconference in. I have a weird thing going on in the lining of my brain which caused me to put my treatments on hold. They haven’t ruled ruled out a dural tumor, but I feel much better knowing a group of brain specialist are on the case. Maybe your doc can find/join something similar so you have access to all options if not alre already there. I didn’t know these boards were out there till recently

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