Calling all TNs

thank you luah, I knew something wasn't right and tried to get my numbers together this morning to clarify, but not being a numbers person it just wasn't coming. Thank goodness to you numbers people. So my summary and understanding goes like this, a simplified version but it helps to clarify in my head and probably others; Most breast cancers that are BRCA+ are usually tn,  but it does not mean that most tn are BRCA+. If you are tn, have a family history of BC or ovarian ca, are <40, are of Ashkenazi descent (Jewish Eastern European), are male, have recurrent cancers (and there may be a few more) you would "qualify" for BRCA testing. I had 3 of these (tn, 1 grandmother with ovarian ca very late in life(but no BC in the family) and Ashkenazi descent) and was tested but was negative for the BRCA gene mutation.

Huggs dizzy, fingers crossed.

Dizzy,

That's great!!

Dizzy- Congrats on 3 years NED!!!

Because I was only 40 years old at time diagnosis with no family history, my MO requested genetic testing for the BCRA 1 and 2 gene.  My insurance required genetic counseling before they would pay.  I went through the counseling which was very informative.  Fortunately, I tested negative.  I was never advised I should test because I was TN.  I think the Cancer Center I go to recommends all women get tested.  I've met a few young women with BC who were never tested nor was it ever mentioned.  Different MO's recommend different things.

Dizzy,  So happy for you! 

Yeah, Dizzy, doing a happy dance!!

Did anybody get an inconclusive BRCA testing? I did for BRCA 1 and it's sooooo frustrating! I'm in the gray area and not sure what that leaves me in regards to getting ovarian cancer. There is no breast cancer in my family, but found out my great grandma and her daughter (great aunt) diead of ovarian cancer. That's all the family history that could potentially affect me. Sooo, still don't know if I should get an oophorectomy or not. For now I'm not because I'm still healing (physically and emotionally) from this year's mx.

Anybody else have similar stories?

Superbody my BRAC test came back as inconclusive as well. My grandma (Mum's mum) had breast cancer and died at age 86 and my mum died of ovarian cancer at 48.  I really don't know what my chances are for ovarian cancer or where that leaves my beloved daughter.  I too don't know whether to go for an oophorectomy either.  It's the thought of it going to my daughter or her daughter that frightens me.  I can understand your frustration but I'm not sure what to do about it.

simple, I see a new pucture. Nice! Looking good with nice hair regrowth.

Congrats dizzy and coop!

For those of you with inconclusive BRCA testing, I imagine that is very difficult with regards to your children.... I'm sorry for that. I hope you elected to keep your blood on file if you were given the option. There are so many studies going on with those two BRCA genes alone looking for other known mutations as well as research with other genes. Maybe something will come up that will eventually give you some direction and you won't need to wonder.

BAK94 and others;

I had tnbc in 2010 and in the last year, I've had neuropathy that has progressed thru my entire body.  I had it really bad in my hands and feet after chemo, but this is not related.  Chemo neuro does not start progressing after 4 yrs per my neurologist.

Anyway, it started with the 'stocking/glove' syndrome Bak94 describes.  Its been 6 months of ruling this and that out, and I"ll have a brain scan sometime next week.  50% of neuropathy is idiopathic (unknown) and I hope I don't fall in this category because its misery.  All general blood tests are normal but the fatigue is off the charts.  

So here's my question:  Has anyone had a recurrence that was preceeded by painful neuropathy (my bones burn and my skin feels sunburned).  And yes, I've tried everything to deal with the pain. You won't scare me...I just need a diagnosis before I lose my mind!!!

Love to all my tnbc sisters

Ruth

Dizzy - congratulations!!!

Coop - awesome news!!!

Ruth - my situation isn't actually like yours, but I had to respond to your post. I don't have typical pins and needle neuropathy, but something is going on with my bones. During chemo I had terrible, every day, constant bone pain in my sternum, ribs, shoulder blades and spine. Over time, while still on chemo actually, it got better. However, 2 weeks after finishing chemo, I developed a sharp, stabbing ache in my rib, on my back. The rib is also tender to the touch, worse at rest and first thing in the morning. I have other ribs that are tender to the touch, but not painful otherwise. I also have occasional pain in my spine, back, hips and shoulder blades, although it's not as painful or constant as my one spot on my rib. It's an odd pain that I've never experienced before. I'm in the process of trying to get a bone scan (my insurance denied it so I'm appealing), but my onc keeps telling me she doesn't think it's mets. Since they did a bone scan when I first had the pain while on chemo, I had to make a really big stink to have further evaluation. So while I'm worried, deep down I trust my doctors and think it will come back clear. From my own research, the ONLY other thing I can come up with that would be causing the pain is an idiopathic neuropathic pain syndrome that has settled into my bones. Pain syndromes aren't super common, but known to happen post chemo, especially after Taxol. I'm not sure about them developing years down the line, but it wouldn't surprise me. As grateful as I am to chemo for saving my life, it has ravaged my body. You mentioned seeing your neuro, but have you talked to your onc about it? Again, I know our situations are different, but I had to respond to you because, like you, all I want is a fricken diagnosis at this point. I'm doing my very best to live my life and focus on other things, but it's difficult when you have a nagging pain in the background for which you have no answer. I'm sending you many thoughts and prayers that your upcoming brain scan is clear and you get some concrete answers soon. Please keep us posted. 

Ladies, I'm hoping you'll indulge me in a little poll. If you were told rads would decrease your risk of recurrence by just 5-7%, would you do it? I think I mentioned here before that although my nodes were clear, I had probable LVI. My rad onc said the LVI, along with the facts that my tumor was near the chest wall, I'm premenopausal, and my tumor was over 2 cm, all put me at a greater risk of recurrence, so he's recommending rads. (He based that info off a study out of Harvard.) Both my BS and onc have told me if this was their decision, they would not do it because the risks of rads outweigh the 5% benefit. They both mentioned that the pCR I had was basically my insurance in place of rads. I hear that, but I just don't think I can walk away from this leaving those percentage points on the table. I'm getting one more opinion from an expert at a university hospital tomorrow, but I'm 99% sure I'm going to do it. I realize this comes down to what I'm most comfortable doing, but I'm curious what you all would do and why. 

Ally. I was faced with your radiation dilemma. 2 docs for and 1 against so I went ahead and had it. At the time I didn't think I could forgive myself if it came back and I had  said no. I'm better educated about it now and wouldn't make the same choice. My reasons are: They can only radiate once. If you have a recurrence or another cancer in the future, that treatment is no longer an option.  The side effects don't always display themselves until years later. Some of the complications are very serious, I'm not sure with a clean pcr they are worth the risk.  I believe radiation was directly responsible for my development of lymphedema. I had cording issues within 3 months of treatment and first symptoms of LE developed after that was resolved. I'm currently worried about some nodes on my radiated breast, either the radiation didn't work and it was all for nothing. or this is just one more complication of rads.

It's so hard all of this making decisions when you can't see into the future. Ultimately you need to be able to live with yourself and your own choices. Just look up some of the long term side effects and make sure you have all the information you need before you decide either way.

I'm so sorry to read about some ladies experiencing SE's up to years after treatments are concluded.  That really makes me nervous and doesn't seem fair.  The Regional Cancer Center I treat at provides patients (not obligated) with a Naturopath.  Before I started chemo the Naturopath recommended supplements (approved for cancer patients) that helped minimize some SE.  The biggest one was the neuropathy.  I will undergo a protocol in early October that will specifically prevent long term SE's, detox the body of the chemo drugs and help prevent a re-occurrence.  This part of the everything I've gone through (and my up coming exchange in November) is something I'm really looking forward to.  Its bad enough getting diagnosed with cancer, I don't want to spend countless years living with the effects of it. 

Good luck to all.

Lucy - by you being testing and if it comes back +, it much less expensive for your daughter...difference could be thousands

Just wanted to ask if any of the ladies have been given Aloxi or Emend for nausea?  I received both today in my IV- chemo #4 treatment just concluded.  I've been having awful nausea during my last three txs.  Have any of you had theses nausea drugs and if yes, did they work?