Calling all TNs

FernMF -Welcome.- I don't have any stats for you, (Paging LUVRV, she has really great info for these type of questions), but I highly recommend you read this short article on breast ca from Dana-Farber's Turning Point magazine.





http://www.dana-farber.org/Newsroom/Publications/Holding-promise--Targeted-approaches-for-breast-cancer-treatment.aspx



The key paragraph I would like you to consider is as follows: "Back then we were taught that cancer begins in the breast and spreads through the lymph nodes to the rest of the body. Now we know that this is not true. Tumors that arise in the breast my spread through the lymph nodes, but they may also spread through the blood stream, both routes, or not at all."



Based on the above info, my personal vote would be for chemo to attack any rogue cancer cells that could have traveled.



Hope this helps you with a difficult decision.

all my research and advice from doctors said hit it with all you have cuz that IS all we have, meaning no tamoxifin or other 5 year things to keep recurrence down.  If you have not already check www.tnbcfoundation.org.  It is a forum dedicated to us TN gals.  The facilitators are so knowledgeable about TN and you can get some stats from them.

Maggie

TGIF my dear...... No, I had the right person. I was just teasing you! Yes, I agree we disagreed, but that's what makes people, well.... people. You are so awesome :-)

Jazzy- I am blaming my inability to realize you were teasing on chemo brain! I blame everything on chemo brain-so ladies, if I say something stupid or don't get something, that is and will always be my excuse!! We can use that excuse forever, can't we?!!

Thanks . . . I had Breast MRI before surgery to SEE everything there was - the sentinel node was negative at surgery, but later pathology showed up a 0.83 mm IDC . . . the surgeon and his team said (yesterday) to see the oncologist, but that he didn't think we should "take more nodes" to make sure.  First oncologist appt was a nightmare - the doctor misread the results as 8.3 mm and scared me greatly.  Once I figured out she had not read the pathology correctly, and jumped in without thinking, I will NOT go back there.  2nd oncology appt is pending.  Looking on line is a "CHOOSE" what you want to read thing . . .

Fern - the site that Mags suggested is reliable and specific to this disease.



There is also www.cbcf.org which is the Canadian Breast Cancer Foundation (compliments of Tazzy)



Another is Dr. Susan Loves Research Foundation. This link should get you there.



http://www.dslrf.org/endingbc/content.asp?L2=1&L3=1&SID=381

Ok, I'm back in after floating on the lake reading on my Kindle and ignoring the rest of the world for a couple hours!  We had a little outdoor dinner party for friends last night and between cooking and cleaning, this girl was pooped out.  Recovery well underway!

Now, Fern, let me tell you a story.  About me.  I was diagnosed with slightly ER+ stage 1 IDC in June 2010.  I had a lumpectomy and sentinel node biopsy - everything looked just fine.  Every oncologist I saw tried to convince me to have chemo.  But I am diabetic and everything I read suggested that diabetics did very poorly on chemo.  My Oncotype test (hopefully you will have this test) said I had a 30% chance of distant recurrence (mets) if I skipped chemo.  In my mind, that meant there was a 70% chance that I would NOT have mets.  So I passed on chemo, did Mammosite radiation, and went on Femara in August.  Everything looked pretty good until January when my tumor markers started to rise.  In February I developed a huge seroma that was drained in March.  Cytology showed the BC was back in the same breast and it was triple negative.  An MRI showed some axillary nodes also involved.  And a PET/CT showed intermammary nodes along with three axillary nodes now involved.  Talk about progression - the lesion on my breast was 4.6 cm!!!  So, I went in for the BMX and full axillary dissection, followed by dose dense chemo Adriamycin, Cytoxan and Taxol.  And I had external radiation to my chest wall, supraclavicle nodes and intermammary nodes.  So that makes two rounds of radiation - I thought for sure I was done with this crap.  A PET/CT scan in October showed me to be in remission.  And then April rolled around and the tumor markers started to go up again.  So I had another PET/CT in May and crap, now I have mets to my lungs along with some nodes scattered here and there.  I'm telling you all this because statistics are nothing more than that...statistics.  It really is not predictive of what will happen to YOU.  If you want to check out what the statistics are for your particular situation, you can go to

http://www.lifemath.net/cancer/breastcancer/outcome/index.php

You can enter in your own information and learn what the statistics say about your own situation.  You have a positive node.  One thing I had said with my first diagnosis was that if I had a positive node, I would definitely do chemo.  I am not looking back on the decision I made.  I am just suggesting that statistics don't mean a whole lot where breast cancer is concerned.  But doing chemo definitely increases your chances of beating back the beast.   No guarantees, mind you, but then there are no guarantees in this life.

Forgot my other news ladies. After almost 2 mo of fighting I have gotten my insurance company up to paying 80% of my BRACA testing (were only going to pay 50%). I spoke with Myriad today, and asked that since they accept 80% from Medicare, would they please accept this as full payment. They wouldn't give me a definite answer, but said to call back when I get my bill ( $808.00 ) and they will see what they can do. I just made it in under the wire because my sample expires on 7/7. Actually, I hope they make me pay something, because I want to appeal my insurance companie's decision (Catch 22, you're not allowed to appeal, until you pay the claim). I believe, that by their own rules, they are required to pay this testing at 100%, and I'd like to be able to make a difference for my sisters that will be facing this in the future.

Congrats, kathyrnn! Score one for perseverance!

ldbarne, welcome; 'though sorry you have to be here. Before you stop chemo, scroll up a few posts and read LuvRVing's post. TN can be scary, because drugs like Tamoxifen, etc. aren't available to ward off recurrences. On the flip side, chemo is very effective against TN.

I'm not sure what you mean by the 5 year thing. No, many TNs survive and thrive. I've heard it explained, though, that because TN is so aggressive, IF you're going to have a recurrence or develop metastasis, it will usually happen in the first 3 or so years after tx. In fact, by 5 years out, our rates of recurrence actually drop below that of hormone-positive BCs. But we, like all BC patients, have no guarantees and can relapse 5, 10, 15 years later. Most people think that if you've survived 5 yrs after having cancer, you're considered cured. That does not hold true for BC, I'm sorry to say.

ETA: Have you told your oncologist how much trouble you're having? There are lots of drugs now to manage the side effects, so you don't have to feel so sick and discouraged. This is your best shot at stopping this thing in its tracks right now. And I don't want to frighten you, but clear lymph nodes are no guarantee that some stray cancer cells haven't escaped the breast. They can go into the bloodstream and bypass the lymph nodes. Chemo is your best insurance of zapping any stray cells that may have gotten out.

Inmate - woohoo what fabulous news - dance with NED!

 CS, please stay, I look forward to your posts daily! 

Kathy - before you pack up and move to NH (not that I would want to discourage such a wise, wise decision!!!) here are a couple points...

I was living in the Kansas City area when I had my first occurrence.  My first oncologist (actually TifJ and I had the same guy) ordered the Oncotype test because I was ER+ at 8% and my sentinel nodes were clear.  He really didn't want to, said it wouldn't make a difference in his recommendation, but I was insistent.  I am a Taurus, there is not much point in arguing with me   The Oncotype test came back as TN (I was just a couple decimal points short of being ER+) and thus the high recurrence score.

When I turned down chemo and finished the Mammosite radiation, he asked me if I would agree to Femara and I said yes.  At that time, he started doing the labwork including the CA 27.29.  I think it was that practice's standard of care...TifJ could probably answer better because she's been with them for a while now.  His plan was to do one every 3 or 4 months.  But the second one came back elevated.  We waited a month and retested and it was higher.  Then all hell broke loose! 

When I started going to Dana Farber in Londonderry, my local oncologist gave me the "not our standard of care" response.  She said it's not much value because you don't have a point of reference.  I said I had 3 results in my history, so I definitely had a point of reference.  She also recognized that I had special circumstances and so that took care of that problem.  The CA 27.29 became standard of care for me.

I had a similar discussion about the PET/CT scan and came to an agreement that we would do one only if my CA 27.29 was above normal.  In April it came back at 55 and now I'll be having those scans on a regular basis...unfortunately.

Keep in mind that your stage 2 diagnosis is different than the stage 3b that I presented to Dana Farber.  I suspect that standard of care may be slightly different for different stages, and 3b has the highest percentage of likely recurrence/mets. 

All that said, it's just a blood test.  They're probably checking CBC and CMP, so what's another tube for the tumor markers.  Be insistent.  It's your life, your worries.  I doubt your insurance company will balk at paying for it.  I guess if DF wouldn't do tumor marker testing, I'd go find an oncologist or PCP who would.   Dr. Harris, who is the chair of Radiation Oncology at DF, and directed my treatment, said he was glad he wasn't my MO because he knew we'd butt heads over type and frequency of follow-ups.  Nicely, of course!

Maybe the fact that my mets were discovered when they were tiny won't make a difference in long-term survival, as the statistics would indicate.  Only time will tell.  But I've defied every statistic so far, and now it's time to defy them in my favor, for a change!  You can't convince me that finding little mets early isn't better than finding big ones that have festered for years. 

Ldbarne - it's horrible that you are dealing with breast cancer at your age.  And TN is scary at any age.  But rest assured that there are many, many long term survivors.  There are discussion threads on this specific forum, I think, where women have checked in after reaching survival milestones.   As for your chemo side effects, talk to your oncologist or chemo nurse.  I assure you, there is a pill or treatment for almost every single side effect you can experience.  Last summer I felt like a chemical waste dump, treating symptoms of chemo so I could live my life as normally as possible while undergoing treatment.  There are all kinds of anti-nausea meds, treatments for mouth sores, anti-diarrhea, anti-constipation, antacids...you name it, there's probably something that will treat your side effects.  There is no pill for fatigue, unfortunately, so you have to let yourself rest when you need it.  And there's no antidote to the hair loss.  But for everything else, there is help.  The one thing you must remember is to hydrate.  I'm convinced that hydration is the single most important thing you can do during the entire time you are on chemo.  Whether it's water, tea, coffee, soft drinks, watermelon, grapes, soups, whatever...get at least 96 ounces a day.  When you're sitting in that chair getting treatment, keep an icy cold beverage right there and drink up!  If an hour of hydration and anti-nausea meds prior to getting your first chemo infusion are not part of your protocol, insist upon it.  And hang in there because, believe it or not, it will be over sooner than you think.

Just don't gigglesnort, Kathy!

And bumping for Kimmie.

To late Riley!



Ldbarne- welcome, the ladies have (and moderators) have given good advice. Please don't hesitate to come back and join us.

Kathrynn - oh shit could only happen to me.  Actually my hands and fingers are so bad I cant even turn the pages of qa magazine.  I hope to goodness they come right or I am up the creek without a paddle.   

Well as you can see, my getting to bed early didn't work.



Minxie, I remember being tired but I don't know if it was that severe. I didn't pay to much attention to how much I slept, when I was tired, I just slept till I felt like getting up. I do remember complaining to a friend that I "didn't know why I was so tired" and her prompt response was, "duh, dumba**, you're getting radiation!". That's all I needed to hear to get the right perspective, lol. Snooze away and feel better!