Calling all TNs
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Hi Everyone,
First, Ag23, I'm so very sorry to read what you are going through. My thoughts and prayers are with you and the doctors who treat you!!
Triple Negative + BRCA1 mutation
I'm apologize if this question has been asked in this thread before, but it contains over 34,000 posts and it's difficult to wade through all of them. I do note that the original poster wrote in 2010 that she had a lumpectomy.
My question is simple (I think).
Anyone with Triple Negative, who ALSO has the BRCA1 mutation, only have a lumpectomy (plus radiation and chemo)...and not a mastectomy?
Thank you.
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Ag23 so sorry to hear your news. I’m sending you a huge cosmic hug. There are no words to express how I feel about cancer, it really is a beast. Scientific research and progress is continuing all the time though. Survival rates from all stages are improving and sometime soon, there will be big breakthroughs.
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Ag23....as a TN with 2 young boys I don’t have any advice but wanted to let you know that I am thinking of you and sending positive your way.
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Ag23 are you getting any genetic testing on the lung met? Something might have morphed, and if so, you may have other treatment options. Keep us posted! Sending gentle hugs and encouragement.
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For me, one of the few positives of dealing with bc is that i have met some really wonderful people that I would not have come across otherwise. The down side is that I get very thrown when things don’t work out ok for them. A couple have had progression and two have died. I go from feeling mostly positive to the absolute opposite. I know that I would never give up the friends that I’ve made but I wonder how many of them will devastate me.
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Hi all - I just read the sad news on another thread that weimlover (Wendy H) has passed away. She was a TN sister who fought hard. I know she was a mother and my heart breaks for her family.
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hi;
I am just joining this thread, diagnosed yesterday from lumpectomy path results with Triple negative. Stage 1b. I know I will need chemo, and I have an appointment for a wig. Otherwise I am just frozen.
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Farfalla, you have come to the right place.
It is very scary to be diagnosed! Be aware that TNBC is often *very* responsive to chemo. That's the silver lining of TNBC. You can actually kill it dead, and live out your normal life span instead of having it hang over your head forever, as with some HR+ cancers. After 5 years, the chance of recurrence drops to nearly zero.
What can help unfreeze you: once you have heard what your team recommends, asking questions, and hearing from other people about what helped them. Getting a second opinion if you are on the fence about anything. Before long you will be one of the people giving advice to the next person.
This is what this site is so good for: sharing experience, wisdom, and support. We are all sorry you are here, but happy you found us.
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Hi Farfalla6. I was diagnosed on 1/18 and I can relate to the frozen feeling. The unknown is so debilitating. I think the hardest part is when you just find out and are waiting for the next step. It is a huge roller coaster. If you want to chat I am available. Just PM me.
Did you have a lumpectomy or a biopsy?
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Welcome and so sorry, Farfalla. Things will get better once active treatment begins. There will be side effects, but that helpless feeling diminishes.
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VL22, i've been thinking a lot about Wendy the last few days. We have a mutual friend but I didn't know her story until after she was diagnosed with recurrence last summer. Our stories unfolded in totally different ways, but I sure felt for her during her struggles since then and i'm so sad for her family.
Farfalla6, welcome to the thread. Please reach out if we can be of any help to you.
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hi
I had a lumpectomy and sentinel node biopsy, they ended taking 4. I’ve just had a seroma drained from armpit. Meeting with oncologist next week
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farfalla6 again. Pathology showed dense lymphocytic infiltrate, 70-80% immune cells. I’ve googled this like crazy and it seems like a good prognostic factor. Does anyone know about rhis
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Is that saying the same thing as there being lots of TILs? If so, that's good.
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Yes, they said 70-80% tumor infiltrating lymphocyte
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yes, 70-80% tumor infiltrating lym
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Farfalla, that's great news. Have they told you what grade? Or given you an idea of what the suggested treatment plan is?
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meeting with oncologist next week
Pretty sure I’ll need chemo
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I see you had pcr; did you have lymphocyte predominant
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I think its wise to treat TNBC aggressively.
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They did not test me for that... I have been curious about that, but I do not know. I think I had *necrosis* predominant. High grade, Nottingham of 9. I had chemo prior to surgery.
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My grade was high too, either 3, or Nottingham 8 too. Trying to learn lingo. Surgeon checked with pathologist because I asked about percentage of lymphocytes. Apparently ( this is all googling, so...) there is a correlation between an immune activated subtype of TNBC and v good prognosis, at least this is what I seem to find, and pathology said this Amt of TIL cells is unusual
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Yes the Immunological subtype is one that tends to respond well to chemo. As does Basal 1. I think I must have been one of those two. Not sure though. My AR + was very high but my MO said that the other subtypes besides LAR can also be AR+
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Hi!!
Really nice to login after long and see old faces/ names in here! Anyone finds me familiar too?
Love to all..
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BanR - I do remember your name from this thread a few years ago - I don't participate much any more, but do wonder about past posters! Hope you continue to do well - I am just about 6 years finished treatment now and so far so good - I am filled with gratitude!
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Always make me happy to see fellow TN’s doing well several years after treatment!
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I remember you too Adagio! I hope others from our days keep swinging by here on and off too.
Sending wishes for good health to everyone
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inspiring to have you stop in!!
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Good morning ladies. I have a question. I am half way through rads, I finished chemo Dec. 20th. Had surgery in january. Last few weeks my hand has been going numb and painful at night. Anyone developed neuropathy after chemo? It's so painful.
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I was told it can happen as a delayed reaction, but it might also be spurred by the rads. Is you breast inflamed or swollen? Mine is (24/28) and my nerves are acting up but more in upper arm/breast. Mine is not intense but more like the post-surgery zingers. I would call your RO and mention it.
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