Calling all TNs

Congrats Ally!! Yippeeee..you are cancer free!!

Good to hear Mags that u completed 3 years and out of danger and LRM..you are 5 years out, that means even you are cancer free, i guess

 talking about Metformin, it wasnt recommended to me. He said he had done a study on a good number of women and didnt find much difference in post chemo setting but Metformin does help during chemo..the same chemo works better, if taken with Metformin, but again there are other risks associated and he uses Metformin with chemo only in metastatic settings.

canuck- even i have very low estrogen as confirmed by one pathology lab but rest two said pure tnbc. my onco said tamox does have a chance of causing uterine cancer ..so in my case the risk outweighs the benefits.

Ally, Congrats I also had PCR with my MX. I didn't see your post since I just had recon hip flap surgery on Weds. I'm hoping that by having PCR is the best case scenario with regards to recurrence. I will have to ask my MO about starting Metformin. I also take Turmeric 450mg/day. We all need to pool our thoughts and hints about helping to prevent recurrence of TN.

Yay!! Simplelife4!!! I'm so happy for you!

Just my personal 2 cents...with the triple negative diagnosis, I would go for the genetic testing to see if you are BRCA positive. 80 percent of BRCA cases are triple negative (the converse is not true so do not freak out). If you are BRCA positive, I'd skip the lumpectomy and go for a bmx. If it were me, I'd go for the bmx anyway, but I'm pretty radical when it comes to those kinds of choices.

I did have genetic testing done and my BRCA 1 & 2 came back negative.

hi simplelife4!  Thank you for wishing me a PCR:).  I did have genetic testing done and turned out not to be BRCA 1 or 2.  My lymphnodes are also not affected according to MRI, Ultrasound and mammogram. Imaging.  So I gather you had a misectomy?  

Sally,

Since you're not BRCA positive, it seems the choice is yours!

Before I knew my BRCA status, I was leaning toward a double mastectomy just to have everything over and done and minimize the risk of recurrence (though studies show it doesn't matter) it just felt like it did.

I now realize: 1) Lumpectomy and chemo take less time than mastectomy, chemo, reconstruction (I'm looking at way over a year by the time I'm done) 2)With a lumpectomy I would've needed radiation but with the mastectomy I didn't. 3) I lost just about all the feeling in my breasts and no longer have nipples with a mastectomy.

These are some things you can discuss with your doctor and way how important each issue is to you as an individual.

Just catching up as I've been away for a while.

MonikaV: So nice to hear from you. Glad you're still doing well. I'm still kicking around these boards from time to time... coming up to year 5 very shortly!

Nettie: My affected breast is still tender when massaged/examined. My onc said it's a pretty normal result of scar tissue and may last forever.  

Re metformin:  does anyone have a link on the study and its preliminary results?  Is it being given alongside chemo or post-treatment?  My onc wouldn't prescribe as it's considered off-label for now, and I never pressed my GP for it. I wonder if it's metformin that's the beneficial agent or simply having good glucose processing/control which non-diabetics would have anyways without the drug...? I know the study was initiated when they discovered that diabetics (on metformin) responded better to chemo than non-diabetics.   

Sally,

The sentinel nodes are a few of the nodes most near to the tumor.  This is standard procedure to find out if there is lymph node involvement.  I hardly noticed they were gone.

Hugs,

Peggy

I did my reconstruction surgery last week and path on my right breast was negative. I really didn't think about the possibility of cancer in my other breast but the good news is there isn't any. Now I just have to follow up as needed.

Can any of you tell me if after treatment you had random pain?  I mean I feel like a crazy woman, one day I have pain in my head (not a headache), next will be pain in my hip, then maybe my leg, then maybe my arm!  Due to scoliosis and rads damage, I have back pain everyday!  It's not always there, but certain movements make it hurt everyday!

I would just like to know that I'm not crazy!  All my doctors seem to dismiss it as it is not affecting my daily activities, I mean, yes when I hurt, I slow down, but none of the pain is so bad that it puts me out of commission!  Just aggravating pain that keeps me worried about mets!  And yes I've asked for scans, but so far, all concur that none is needed!

Thanks so much, everyone, for celebrating my pCR with me! When I tell people in real life, they aren't as excited since they don't really get it…through no fault of their own of course. I'm almost 2 weeks out from my BMX with TE's and feeling really good. All 6 drains are out and I've had my first fill. Neither of those procedures were fun, but I powered through. Now I'm back to trying to decide whether or not to do rads. I'm node negative, but my LVI was indeterminate, so my rad onc was previously recommending rads. Now that I've had a pCR, he said he's "shying away from it" based on it not being worth all the side effects and risks at this point. He's sending me for a second opinion, but the decision is ultimately mine. I have to decide soon and it's to the point where I'm not sleeping at night trying to figure this out. On one hand, I want to fight this beast with everything possible, and be as aggressive as possible. But on the other, I don't want to put myself at risk for a slew of serious side effects such as later cancers in life and serious reconstruction complications if I don't have to. Oh how I wish I had a crystal ball! Don't we all! 

Maggie - wishing you all the best with your revision! 

Dizzy - my MO is of the same mindset about finding mets. She says the prognosis is the same whether they find it before or after symptoms. I get that. But maybe I'll live 10 years if I find it early compared to 2 if I find it late. I want that possibility, so I find the whole no scan thing infuriating. 

Gram - congrats on also getting a pCR, and for a clear path on the other breast!! I hope you're recovering well from your surgery. Sending you gentle hugs. 

Nettie - I could have written your post. I'm in more pain now after just finishing chemo than I ever was during. My joints ache every single day. My back aches to the point where I now sit on a heating pad every night. My body is so, SO stiff. I have sciatica pain down both legs some days. Rib pain in one distinct spot … and this was all BEFORE my BMX with TE's last Monday lol. My MO won't run any scans either. Her response is always, "keep an eye on it" which feels like such a blow off to me. And yes, I also feel like a crazy lady. With every pain, the mets thoughts pop in. Most of the time I can quickly dismiss them, but sometimes I can't and work myself into a tizzy. I'm still learning how to deal with these fears. For me, it is THE absolute hardest part of having cancer. Fighting it was a peace of cake compared to living with the fear of it coming back. Once I'm healed from surgery, I'm going to start seeing a counselor. For me, I think I have to find peace and accept the fact that there is a real possibility of being dx with a fatal disease. I can't just ignore the fact. My mind doesn't work that way. So hopefully a counselor will help me find a way to come to terms. 

Sending love and hugs. 

Alicia

I had my annual well visit last month with my new pcp.  she was wonderful and scheduled a bone density test to baseline, its in october.  I got my blood work results back and was surprised to see my wbw so low.  on their chart they want it between 4-10 and i was a 3.1.  I went for a 30 day retest yesterday and just pray it came up.  Is this an indicator of what we all fear?

Ali,

I don't know a lot about radiation, but I do know once you do it, you can never do it in that area again. If there is no more cancer, what exactly will they be radiating? Your entire chest?

I'm not sure which way I would go in your shoes... but if my doc said he was leaning away from it, I'd consider saving it for the future as a just in case!