Calling all TNs

Sandlake

JazzyJ~ i don't mind the questions...After my chemo treatment was over in April, I had the genetic testing done.  I didn't qualify before for the test, but since the guidelines changed to include TNBC I opted for the test.  I am BRCA2 positive.  So for peace of mind for me I decided to have a hysterectomy/oopherectomy (Aug 20th)  and my BMX (Sept 10th).   

NavyMom~ your words are very encouraging, thank you!

journey4life

Navymom - thanks for the encouragement! I hope one day to be an "oldie."

It is somewhat comforting to know that others are in the same situation I'm in regarding scans. Sounds like some of our MOs went to the same school. I have a few additional comments about scans. First, I'm not asking for a scan at any regular interval. I'd just like to have one...sort of a baseline that tells me/us, "right now, we see NED." Second, taking one characteristic of BC at a time does not warrant a scan. However, taking them all together (BRCA1+, TN, lymph node involvement that was extracapsular and a poorly differentiated tumor) IMO warrants a scan. Third, peace of mind goes a long way in the healing process. Fourth, what if there are no detectable symptoms and yet cells are multiplying?

Enough said. I have an appt with my MO next month. This will certainly be something we discuss.

On a brighter note - I hope to have exchange surgery in November! Time for these uncomfortable TEs to come out.

Hugs and love to all

Titan

Welcome to the new ladies!  Navy..if you are an oldie what does that make ME? 

Re..scans..nope never had one...ever...after I was done with treatment discussed with onc and he said if you want one you can have one..anytime but remember that scans show EVERYTHING and and may create alot of stress for you...I felt like I had been through enough stress at the time and the thought of adding to it just wasn't for me...either the chemo worked or it didnt...

Yes...I am very vigilant on symptoms...I like the two week rule myself...if I feel like something is going on I think..ok..lets give it two weeks and if not better I will call the onc...usually the "symptom" is gone within a couple of days and I forget about it..

Things I watch for are shortness of breath, headaches, fatigue, weight loss/lack of appetite, and just apathy about life in general...before I was diagnosed I lost alot of weight, my hair looked like crap, and I really had alot of apathy towards life..just didnt feel right...so I watch for this kind of stuff...

Sugar77

Titan - I've seen your photos, particularly one's from your daughter's wedding and you are the vision of health!

NavyMom

Titan, that makes you about 2 months "older" than me! 

journey4life

Found this on another thread and thought I'd post it here:

Some really exciting news for us triple negs reported yesterday in USA Today here regarding mapping all BC gene mutations among other things:

usat.ly/PNNCNO

Sounds promising!

NavyMom

Thanks for great article, Journey.  Interesting that they may be looking at the PARP meds again.  Also sounds like Avastin may have a comeback for TNs. 

I understand that BRCA 1 positive usually goes along with the recommendation of oopherectmy....Now since they are seeing such similarities between TN ovarian CA and TN BC, I just have to wonder if oopherectomy will be recommended for BRCA negatives, too.  I will be asking about that at my next Onc appt.

Thinking of you Hope and Inmate.

mccrimmon324

Congratulations on your cancerversary Sandlake. I had a lumpectomy last year but will be having genetic testing next month. If positive I will be looking at a bit more surgery.

bak94

Happy Monday to everyone!

Would love to hear from Hope and Inmate, but I know the both of you are probably pretty tired, (an understatement I am sure). We miss you!

Sandlake

Titan~ Great post you started!  Love how supportive everyone is.

Heather~ The genetic testing changed my life, and will help my family members be proactive.  

Journey~ Thanks for sharing the article......great progress!!!!

NavyMom~ Being BRCA2 I was recommended by obgyn/onc for a hysterectomy/oopherectomy.  Good question about including BRCA negatives with the new findings!

bak94~ Happy Monday to you..it is a beautiful sunny day here, I enjoyed a nice walk this morning with husband and friends 

journey4life

NavyMom - I hope to have an ooph in a month or so when I have my exchange surgery.

Heather - I pray your genetic tests will be negative! Mom tested BRCA1+ and sister was negative. Why did they decide to have you tested now?

Sending inmate and hope strength for healing!

borntosurvive

I just finished making 22 fascinators for my team of amazing friends and family for the Run for the Cure on Sunday.  Going to sport my pink tutu that I made for my last chemo and we'll all be decked out.  I'll post a pic if I ever learn how to. 

Congrats on everyone's anniversary dates.  Celebrate, dance, sing......we're all greatful.  

I get my results tomorrow from my genetic counseling that I had done in February.  Should be interesting to hear.  I have no family history but because of my age at diagnosis and TN they tested me.  Fingers crossed it comes back fine.  Sending warm hugs and positive thoughts to everyone xo

journey4life

born - crossing my fingers and toes for you!

InspiredbyDolce

Hi Everyone, 

My Oncologist sees me every 3 months.  From what I have read on bc.org most women with TNBC are getting Oncologist check-ups every 3 months for the first 2-3 years or even up to 5 years.  I'm scheduled for 90 day check-ups for the first 5 years.

My profile is:  Stage 1 / 0 nodes / BMX / 4 Rounds CT / Reconstruction / Saline Implants Naturelle by Allergan

  

Best wishes to all of you for a great week!

LuvRVing

Congratulations to all who are celebrating anniversaries - that is so wonderful for you!

(((Inmate))) and (((Hope))) - sending strength and love to both of you.

I had my follow-up visit at Dana Farber last Friday, and they tested my tumor markers and CEA.  So first, I'm doing fine with the clinical trial drug - if this is as bad as chemo got, no one would ever turn it down.  I'm not noticing any problems at all, so far.  it's been just over three weeks and I'm hoping that it continues to be a gentle treatment.  Now, about those tumor markers and CEA - they seem to be in conflict with each other.  My CA27.29 went from 89 to 101, not a big jump but not down either.  It's probably too early to know for sure if the drug is working so maybe this just becomes another baseline measurement.  The CEA, on the other hand, came back at 0.8 with normal being below 2.5.  If this test is valid, I wonder if it's showing the "cancer stem cells (or embryonic cells) are dying out.  I don't have a prior CEA to compare, so there's no context for me.  Some people with mets have a CEA above 2000, so it could be good news that mine is normal.  Or it's possible that my cancer is not expressing the protein that the CEA test measures.  If anyone has any history with a CEA test, I'd love to hear about it. (I'm going to post this on the Stage IV forum, too.)  I think this test is more widely used for colon cancer, but everything I read says it's also valid for breast cancer.  I have a CAT scan on 10/5  so I guess that will be the decision-maker.

I am thrilled about the MD Anderson "moonshot" program.   It's very interesting to know that TN ovarian and TNBC are very similar.  I think we may see some clinical trials with a focus on chemo treatment for TNBC that matches ovarian cancer treatments. 

LynnME

Luv, so glad the trials are going easy on you...pray it stays that way. Wish I could help on the numbers, but I have never had bloodwork done, or if they did they didn't tell me. It will be one of the first questions I ask my mo at my 6 month visit in November.

I too, am sending positive thoughts for hope and inmate miss your posts

Born..thinking good thoughts for you too, crossing all my fingers and toes, arms and legs too!!!!!

Anonymous

Can someone please explain to me the CA 27.29 and the CEA test? I do not know what this is?? should I?

Anonymous

Can someone please explain to me the CA 27.29 and the CEA test? I do not know what this is?? should I?

borntosurvive

Luv:  It sounds like things are working for you.  A gentle treatment is great news and those cancer markers in the normal range is even better. 

I too don't know what the CA and CEA tests are so yes please if anyone can help out Lory and I that would be great. 

mags20487

I have only had the CA 27-29.  It is a tumor marker blood test done specifically for bc. 
Some docs do not use them as they can be erratic for some patients and not a good indicator for metastasis. 

Pet Scan tomorrow...just found out today.  I am starving at this very moment and my daughter just made brownies.  i think she is trying to kill me--HAHA

Maggie

LuvRVing

Both tests measure certain proteins that are given off by the cancer cells.  The CA27.29 test is used for breast cancer, with "normal" being below 38.  The CEA is used for breast cancer, along with colon and other cancers.

Here are links:

http://breastcancer.about.com/od/diagnosis/f/cea.htm

http://breastcancer.about.com/od/tumormarkers/f/ca27-29.htm

Some oncologist don't like these tumor marker tests and don't run them at all. So it's not unusual to not have heard about them.

JazzyJ

Hey Luv, my Onc is one of the MO's who does not go by markers. Doesn't check them..... Not for TNBC anyway. I don't know about other types of cancers.

Cocker_Spaniel

Good morning ladies

Firstly welcome to all new comers. Great to have you with us.

Sylvia - wow 7 years, 3 months and 3 days out.  That is fabulous news for all of us.  You go girl.

Navy - if you are old I must be bloody ancient.  Feels it as well lol.

Sandlake - have you had your oophorectomy yet.  If so can you tell me what it was like.

Born - can just see you in the pink tutu with no hair lol.  Don't forget to post pics.

On the PET?CT scan issue.  My oncologist doesn't do a scan unless there are issues.  She thinks the extra radiation is something we don't need until something shows up.  I don't like waiting for tests and then the test results but I do feel as if we are just left out on a limb although I see my breast surgeon every three months.  Sometimes cancer does nothing but cloud my days and I don't feel any hope and other days I can cope with my fears.  Unlike other illnesses that are horrible but can be cured, this cancer and its prognosis is always going to be on my mind or at least that's what it feels like. I feel I will never be free of it and won't be able to look forward to anything 'just in case'. I feel if I get too positive thats when the other shoe will drop.  Bloody awful feleing some days and hard to cope with.

Thinking of you Inmate and Hope.  Sending big hugs.

Where is our Kathy ladies.  I am getting withdrawal symptoms.

LUV glad the trial is going well. 

Karen hope your scan goes ok.  Thinking of you.

Tazzy how is the radiation going. 

I've had a pain in the other boob for a little while now near my port. Can't feel anything but I'm not sure if its psychological as I am due for a mammogram on that breast soon.     

Have a great day ladies.  Sending lots of luv and heaps of hugs. Annie                  

     

Cocker_Spaniel

Why does this darn thing keep printing everyones post twice all of a sudden.   

Cocker_Spaniel

Why does this darn thing keep printing everyones post twice all of a sudden.   

Cocker_Spaniel

Hey Titan where can I find the pictures of your daughters wedding??

Anonymous

Interesting info on the tests. Thank you to everyone that gave input. I will be asking about them, not to get them, but just to ask about them at my next onco appt. T minus 8 days till mammo.. ativan is my friend!!

Dawn and Hope.. thinking of you both..

LuvRVing

I'm going to say my piece about tumor markers.  My Dana Farber oncologist said they didn't run them unless a patient had symptoms or signs - same story about the outcome is the same whether they find mets sooner or later.  Well, yes, it is true that if you have mets, you'll likely die of breast cancer.  And whether they find them early or later, breast cancer will still take you down eventually.  So the outcome is the same.   What they don't say and no one ever talks about is whether or not finding mets while they are small allows for treatment that might buy you more time.  Well, I have never had any "symptoms" of my mets - not a single one.  The CA27.29 went up, that caused the onc to schedule a scan, and yup, sure enough, the lung mets were there.  Would I really have preferred not to know?  To wait until my lung mets gave me breathing problems?  No!  Logic, to me, indicates that using chemo to fight off a small tumor load is much better than fighting off a big one. 

I prefer to not be blindsided by this disease.  It's bad enough knowing the possibilities, it's another thing to have it sneak up on you and then find out it's too late to even put up a fight.So my advice is this, if you want to know ytumor markers, insist upon them.   

JazzyJ

I'm with you Luv, I want to know. I want every test at my disposal that will give me an early warning, good or bad. I am going to press for both markers and at least one PET scan when I am done with Chemo. I already have genetic testing scheduled (BRCA) for November.

Titan

Cocker..I posted the link like a million pages back...I will check and see if the pictures are still "up" and post the link...soon...promise

I saw my onc every 3 months for 3 years...now it is every 6 starting in November...I still see the BS every 6 months so I am going to try to make work it out to be an every 3 month visit...they are also pawning me off on the pa but I'm not thrilled about that and will be whining...going to make my onc see me whether he likes it or not...dang..I HAVE BREAST CANCER...I don't want to see anyone else but my onc who has had years of practice and schooling..it's MY life..and I'm sorry cause I know that the PA's have to learn..fine..they can learn on someone else besides me...