Calling all TNs

Mags, Beautiful story thanks for sharing it with us! So happy for you all.

Hello Jianchi!

Navymom, happy for you and the joy of grandparenting!

Have a great day everyone

My wife had her regularly scheduled Onc appt today. 17 months from initial diagnosis. Not out of the woods yet I know...but I'm happy to report all appears well! Great Onc appt! Doc says, "I have looked at your records from diagnosis until now. I think it's time you start living your life and spend less time hanging around doctors." So, she will have another 3 month appt in December, and then go to once every 6 months! Doc also agreed to prescribe Metformin, which she had been taking anyway but needing to go to PCP for the prescription. This will take away the need to have to go to PCP for refills. Things are lookin up ladies! All the glory to God!

ALH - Hugs to the both of you.  6 month appointment is fantastic!   Go celebrate.

simplelife4 we LOVE the folks at Vanderbilt. If it weren't so far away that's where my wife would do her follow ups. We went there when she was first diagnosed and they were great. In fact if the local Onc hadn't agreed with Dr Mayer up there on treatment, we would have continued there. Luckily Dr Mayer sent her thoughts and recommendations, which had also been before the tumor board up there, to the local doc and he was in complete agreement...saving us a 2 hour drive each week.

Hi Everyone, I was diagnosed with TNBC one month after my 40th birthday.  I've had a BMX and 3 of 4 TC chemo TXs (no rads needed).  I will have 3 month appts for the next 3 years.  I am curious to know what exactly happens at those 3 month doc appointments??  Is there a blood test, PET scans, etc.? 

Rednheeled woman - I just had my first follow-up appt at the end of Aug with my MO (after 5 months of chemo and BMX).  My MO's position on scans is just like Superbody clearly detailed above about her onc.  I will see MO every 3 months at first and will be discussing/reviewing symptoms.  I was confident with his chemo treatment plan and the care I received, so I am comfortable to continue with him.  I have one friend whose onc has different view and will be getting scans, etc.

Thank you Superbody, Seashore and Meadow for the info.  I belong to a breast cancer support group who believes I should push for a certain blood test (cant remember the name of it).  But, I'm not sure the women are TN.  I think I remember my onc telling me there wasn't a blood test available and that I just need to report any symptoms that pop up.  I'll get more info at a later date. 

rescheduled woman,

I just signed up to participate in some studies today with the Basser Research Center for BRCA. One of the things they are studying is the usefulness of these blood tests. At this time there is not enough proof that they are helpful. The idea is to check blood for isolated cancer cells before a tumor develops. The problem is all of us (even the healthy ones) carry cancer cells. Normally, our body kills them naturally. BRCA people tend to have a harder time fighting them off. 80 percent of triple negative gals are BRCA positive so I'm sure that will come up in the studies.

By the way, if any of you are BRCA positive, the Basser Center is the first of it's kind in BRCA research. Look into some of the studies they are doing. Many of them are over the phone and don't require much if any travel, just family surveys. The main goal is to revolutionise breast and ovarian cancer genetics to the point where there may even be an immunization of sorts. They are doing some amazing work out of the Abramson Cancer Center where I go in conjunction with Fox Chase Cancer Center, both out of Philly.

Hi!

Jan59-Did you stop metformin for awhile? Did your headaches stop? I did have slight headaches also, but not bad.

So glad to hear that everyone is doing so good. I do still get the tumor marker test, as when I was first diagnosed my numbers were a bit high. They then decreased as my tumor shrank. My doc thinks the markers are reliable for me. It does give me anxiety though.

Titan- that is great that you are at yearly appointments!

Mags-So happy that you get to experience that with your daughter! Very touching. I don't have children, but my niece got married this summer. I saw her as she was getting ready and we both started to cry, she was so beautiful and happy. I then, of course, cried as she walked down the aisle. Feeling so blessed to be there and see her marry a super sweet guy! These moments make the fight so worth while.

No scans or blood tests here.  Follow the two week rule.  It makes sense, not that it is easy. I know if I have a concern my family Dr addresses it aggressively and promptly.  I did have a ct post treatment.  Almost 5 years out and doing great!  I have also been involved with the Basser Research Center.  If you are BRCA 1 or 2 positive I would encourage involvement.  I am not close, but was able to contibute familial information and DNA.  I hope it helps.

I had blood work done this week, but I think my MO just wanted to make sure my levels were all ok.  I finished chemo three weeks ago.  He also ordered a CTScan last week.  I got results today.  All good.  He was re-checking my lungs because I had nodules show up on my PET scan last March.  They were unchanged, so he thinks they are scarring from my bout with pneumonia.  I will see him again in two months, then every three months for awhile.  He said he wants regular blood work, but no scans for awhile.

Hope you are all doing well,  lilyrose

Luah,

I didn't do an independent study of my own. I'm repeating the numbers from my genetic counselor. I was told 20 percent of breast cancers are triple negative and of those 20 percent, 80 percent of them are BRCA positive. Of course, you do not need to be triple negative to have a BRCA mutation. If THAT were the case, only 16 percent of women with bc would be BRCA positive and we know the number is higher than that. (Sorry, I was a math major...I love playing with numbers)

I did not independently verify the statistics my genetic councillor gave me because that councillor is Jill Stopfer. She is the founding member of the cancer genetics programs at the Abramson Cancer Center and university of Pennsylvania in 1994, and was one of the first genetics counselors in the country to focus solely on oncologist so I trusted her numbers.

It doesn't mean she's correct...Just wanted to share where my numbers came from! Since I have no family history of breast cancer, the only reason she recommended testing for me was because my cancer was triple negative...low and behold, she was correct. I'm BRCA1 positive.

So I'm an hour away from my recheck of the little nodule I found last month that they assured me was nothing to worry about. I'm afraid it's bigger so they won't have any trouble finding it.I also think there is another one beside it, and just now I noticed an enlarged pectoral node. SCANXIETY. I think so. Fingers crossed for me please. I'm either coming back tonight to announce my 3 year anniversary of being NED or I'll need some cyber hugs.

Dizzy, - sending hugs and BE WELL wishes!

Radical and Luah, I am doing my best to follow your numbers .      I am TN, but did not test positive for the BRAC gene, even though my Mom, and first cousin had BC, as well as my Mom's first cousin.    I am convinced that there is another gene that we all carry that has yet to be identified. 

Thanks Luah,

I do appreciate the studies...yes, we math people love them too! Btw, I'm one of those lucky Ashkenazi decendants! Lol my mutation is over 2000 years old!