Coming to terms with being Triple Neg
I haven't posted in awhile. I had gotten copies of my pathology reports from the core needle biopsy, so I knew ER/PR were both negative. Well, PR was weakly positive. I didn't know the HER2 results until we had our first appointment with the breast surgeon on 3/23. I immediately adored her! I was so glad for that! Makes this so much easier when we like and trust the people whose hands we put our lives into. She was so incredibly positive.
When I found out for sure I was triple negative, I was a little freaked. She asked me why that scared me so badly and I told her I had read some pretty negative stuff on the internet. She loves that I do read and study BC on the internet, but she also told me to stay away from the negative stuff, especially about the triple neg. She didn't seem all that concerned about it. She did tell me we will hit it very aggressively with chemo because of the TN. The breast cancer team will meet on 3/31 to discuss my case and come up with a treatment plan. We will see her again that afternoon to discuss the recommendations for treatment. Definitely chemo. Possibly lumpectomy, chemo and rads. Or mastectomy and I thought I understood her to say that if we do mastectomy, no rads, but I'm not sure.
That first meeting is definitely information overload and I had studied a lot. I can't imagine how it must be for someone who doesn't research first. My sweet hubby took notes on everything, but it was a lot of info to take in.
That same day I also had blood work and a breast MRI. No results of those yet. I guess I won't know about those until we meet with her again on 3/31. She also ordered two other tests to determine if it's true basal like. I don't even remember what she said about that.
My surgery is scheduled for 4/23 although we don't know yet what surgery I will be having. So many decisions left to make and no clue how to make this major decision of lumpectomy vs mastectomy. I think she said we could do a lumpectomy and SNB and then do a mastectomy later based on what we find. She did say lumpectomy with rads had a 7% recurrence rate and mastectomy had 3 to 4%. My first instinct was to take them out- both of them although right breast is fine. Now, I'm not so sure.
She said chemo would start a month or two after surgery. Chemo would be 3 to 6 months total. Treatments would be 3 weeks apart. My hospital likes to wait on reconstruction until after chemo if we go that route. I'm okay with that. She told me I would lose my hair. No news there. I'm looking at options for that too, but buying a wig or tying a scarf is something I have zero experience with.
Based on what she knows now, she is giving me an 80% survival rate. I'm giving myself 100%. ;-)
I am still in that dark place where I don't really know the extent of what I am dealing with. Not knowing the node involvement/possible spread is so scary. I had the Xanax Rx for over two weeks before I finally took one. It helped, so I am taking them twice a day now. I have 1 mg tabs that I cut in half, so I am only taking a total of 1 mg a day. It helps, but it makes me sleepy. I hated taking them until the breast surgeon pointed out to me that I am making myself anxious over taking anti-anxiety meds. ;-) I feel like there is so much I need to do before this really gets started, but I find myself just sitting and reading and thinking most days. It is still so surreal because I feel absolutely fine. I feel 100% healthy, but I am not.
I am so blessed. I have a very large and very supportive family and a wonderful, wonderful husband who is my strength right now. I have great friends and so many people praying for me, some that I don't even know and I am on the prayer list of almost every church in town. I have wonderful insurance and for all that I have already been through and had done, I have paid $20. And really, I didn't even pay that because we have a benefits account through hubby's work that covers co-pays. I have a firm belief that I am going to live and get beyond this. I am so lucky and so blessed.
But I am still so scared. This triple neg thing throws me. Sorry this got so long. I'm struggling today. But the good news is that my nephew is coming up to see me. He's like my own kid, so I am excited to see him. And I know that I will get the strength from somewhere to be happy and positive today because I don't want to scare him.
Hugs to all on this journey.
Mary
Comments
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Dear Mary -
I was diagnosed with TN six years ago. My tumor was 3.5 cent. and I had one positive node - grade III. There are lots and lots of TN survivors out there.
I had chemo first then lumpectomy then rads.
Take one day at a time.
Hugs, JoAnn
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Mary, it sounds like you have a great doctor with a good plan and great attitude. You are lucky! Stay as positive as possible throughout treatment. Yes chemo will make you feel yucky but it's very doable. Keep coming back for support, ask any question you have since no question is out of line and join the group of ladies that will be starting chemo the same month as you since you will lean on each other for support and reassurance. Good Luck, you'll do well!
Pat
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Hi Mary,
I'm sorry to see you here but welcome.
Being TN is frightening but there are some +'s. The biggest being that TNBC is almost always very sensitive to chemo.
If I were you... I would consult an oncologist before your surgery. There are lots of treatment options... including "dose dense" chemo that are very effective. There are also several TNBC clinical trials out there that show a lot of promise.
big {{{HUGS}}} from me. I completely understand your anxiety. I'm in the middle of it too.
Michele
PS. I also had anxiety about taking my anti-anxiety meds... I got over it.
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I am a survivor of triple neg..over three years out since diagnosis and 3 years since finishing chemo.
I did 3 out of the 4 dose dense AC (got very sick and couldn't finish it) and then did 12 weekly taxol. I really wanted to do Taxol dose dense but after my AC fiasco they said no way.
Today..new studies have come out saying that Taxol on the 12 weekly schedule may prove to be as effective or more effective than the dose tense Taxol. Google it. I read it somewhere on line.
At any rate..they do say that triple neg responds well to chemo.
the good thing: after 3 years your chances of a recurrence lower greatly and after 5 years your chances of it recurring are lower than those with hormone positive receptors..but check this out as well. I remember reading this.
I was told that lumpectomy + rads = mastectomy and my onc wrote it out like that for me to explain it to me. could be wrong, though!
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JoAnn, you give me so much hope! SIX years!! Yea YOU!!!!! It helps so much to see stories like yours. Thank you.
Pat, thanks so much for the support. Chemo seems so far off. Surgery is 4/23 and she said it would be a month or two after that before I start chemo. They like to give the body plenty of time to heal, but not too much time. She said it would probably be about a month later. I guess that depends too on which surgery I end up doing.
Michele, my hospital has a breast cancer treatment center. They take a "team approach" to treatment. I'm not sure who is on the team other than the breast surgeon, the medical oncologist and the radiation oncologist. There are many others, but I have no clue who. My surgery was originally scheduled for 4/3, but they had to change it to 4/23 because they couldn't get me in to see both oncologists in time for a 4/3 surgery, so I know the plan is for me to meet them before surgery. The breast surgeon told me I am the captain of the team. I told her then we are in trouble. LOL
Don't know why I fought the Xanax. It rocks!
My very best wishes to all of you too.
Hugs, Mary
dited- ravdeb- missed your post while I was replying to the others. I will definitely check out everything you suggested. Thank you! My best wishes to you too!
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I am currently going through chemo...just had 3rd treatment, 5 to go. I am doing the dose dense AC now and then the dd T. I met w/ my onc. yesterday and asked when I could get my port out...afraid I would have to wait a year after treatment ends, BUT she said 2 weeks after my last treatment (June 4) I could get it OUT!!!! This makes me SO HAPPY! Just wondering how long others had to wait.
TexasRose: I was dx in January and had a lumpectomy w/in 2 weeks after dx. I was waiting to get results from the genetic test to decide if I wanted to go ahead w/ a masectomy, but luckily I tested negative for the gene. Not sure at this point what I will do.
One thing I did read is that it is important to start chemo within 4-6 weeks after surgery.
Best of luck to you...
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I also was quite freaked upon finding out I was TN. I'm a bit better now that I have had time to digest all the info. I am starting chemo on tues. Plan was all in place and now has been changed twice and maybe for a 3rd time. My cancer ended up showing much bigger in the MRI than in the ultrasound so doc recommended neo-adjuvant chemo so I could stick with the plan of lumpectomy. After I received my dx my sister decided she better have a mammo and also has bc. I am 41 and she is 44. Now my docs are talking genetic testing and if positive double mast. with immediate reconstruction. My chemo got bumped from 3 weeks apart to 2 weeks apart and from 4 cycles to 8cycles. Is this what you refer to as dose dense?
Gayle
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Gayle,
8 cycles 2 weeks apart is dose dense and is the "gold standard" for TN BC.
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