Diagnosed TN This Week & Scared!

NYruralrider

I saw the BC onacologist this week and I am TN. She said chemo is not recommended but I could do it if I wanted to but must weigh the chemo risks against the possible small benefit.

I had a 2nd opinion yesterday and chemo was not an option. Radiation and genetic testing. CAT scan of torso Tues.

I had clean nodes w/ DCIS, (5.7 cm), 2 micro invasions, (less than 1mm each). High grade camedo typle stage 0.

I had a partial masectomy.

I don't know if I should have a 3rd opinion or not. Radiation to start early Sept.

Is this a death sentence?? What does this all mean?.....I am terrified!

Is there anything I can do ton help myself?????

Thanks in advance.

Nyruralrider

Scooter-12

Hi Ny...This is absolutely not a death sentence.   In the Symptoms and Diagnosis on the BCO home page there is a section on types of cancers, click on DCIS...you might find the information helpful.  It's normal to be scared...it's a whirlwind of tests, appointments, surgery etc..but things will settle down and you'll be on the other side of this nightmare before you know it.   Weekends are kind of slow, but I'm sure someone with knowledge of DCIS will be along soon.  Best wishes.

TifJ

TN responds very well to chemo. I was told I had to have chemo. It wasn't fun, but it wasn't as horrible as I thought it would be. Best wishes on whatever you decide!!

cookiegal

 That is an unusual diagnosis.

 You may want to read the board for DCIS her2 + with microinvasion. They talk a lot about having such tiny tumors. I think in most cases less than 1mm does not get chemo....but you may want to get a consult with someone who is doing research on TN, or even some sort of a trial.

Good Luck! 

Luah

I understand how scary TN can be, but with such tiny invasive components and clean nodes, it is most definitely NOT a death sentence. Wishing you well.

LRM216

Try going over to the DCIS thread and post requesting "Beesie, please help."  She is the board's wizard on DCIS (although I do not think she was triple neg).  In fact, if you haven't gone there yet, do so - regardless - as Beesie has a wealth of info on that thread re DCIS and microinvasion.  Best of luck to you - and if I had a choice of my triple neg diagnose - I'd choose yours in a heartbeat!  Keep that chin up - you will do fine.

curecx2011

BC is scary but it is NOT a death sentence. I felt the same way when I was diagnisos. It will me  ROLLER COASTER.  However, you will be fine......big hugs...

NYruralrider

Thank you everyone. I will look into the threads/links suggested....I wonder if I should seek a third opinion concerning the chemo??....I almost qualified for a study but my micro invasions ruined that for me. I wish I had not skipped last years mammo...but I was having a bilateral hip replacement. I am pre menapausal...and my mom had BC in her 70's the ER & PR+ not what I have. What can do to help myself...prevent this from happening again??

 NYruralrider

TifJ

NY- I am convinced this is a total crapshoot! There are women who have eaten well, exercised and those who have not and both still got cancer. The dietician I met with after chemo said a low fat, low sugar diet is very helpful in preventing recurrence for those with TN. I am trying to follow those guidelines, but it isn't easy. I am not overweight, but do like sweet treats. It seems cancer, no matter what the ER/PR stats is a sneaky bast@$d!!

cookiegal

I would see what studies there are out there on such small TN tumors....if there are any.

I don't think getting a third opinion is so crazy.

If you are willing to travel, see if you can find an onc who was involved in studying that kind of cancer. 

maywin

It is not a death sentence unless I'm dead and don't know it. I had 2.5 cm IDC eight and a half years ago that was triple negative, If you have microinvasion, however, if I were you I would do chemo. Maybe CMF or AC x4 only? With my tumor I did 4 AC and 4 taxols but I had a much worse situation than you. Still, triple negative can be aggressive and if chemo is available I  would go for it.

NYruralrider

1st onacologist said chemo not recommened by the cancer medical whatever she was quoting...then she added I could do chemo if I felt like I had to do something but would have to weigh the risk of the chemo to my bones VS. the small "possible" benefit....

 2nd onacologist said chemo was not even an option for me. Again clean nodes.

 My micro invasions (2) were less than 1mm each.

If only I had not skipped my mammo last year..I had both my hips repalced...and at the time was 49...who would have thought this? Geesh. now I feel like I need to be cleaning out my things from the house..stuff I know I will not use or doubtful I would use or enjoy to make it easier on my family incase of an early demise.....so scared....do not know how to stop thinking about this!!

Tues. I have a CAT scan of my torso..... How does one find out about "studies"? The local onacologist said my micro invasions bumped me out of one study not far from home.

I am thinking maybe I should get a 3rd opinion at Roswell Cancer Center 3 hours away.

NYruralrider

spotter

I would get a third opinion.  They didn't give me a choice about having chemo; all the doctors said it was THE treatment for triple negative breast cancer.

NYruralrider

Roswell Park in Buffalo called me this AM and gave me an appointment for 8/31. Will be my 3rd opinion for treatment.

 Because I am stage 0 they said no chemo and the 1 Dr. said I could if I wanted to feel like I was doing something but could end up w/ lukemia later from the chemo

Moderators

NY, first here is a link to the main Breastcancer.org site's DCIS pages. Also, you mention an interest in "studies"; check out the Breastcancer.org section on Clinical Trials.

Hope this helps!

--The Mods

NYruralrider

Thank you. The DCIS info. does not truely pertain to me totally, but kind of still does, as I had the 2 micro invasions less tha 1 mm each. The 1 Dr. told me I am in a gray area. One nurse asked me why I had to be so complicated.....I told her that is the story of my life.

I would just like to LIVE!!!!!

Nyruralrider

Cmartin7

NYruralrider: It's ok to be scared and nervous and angry and whatever else you feel. Just get it off your chest when you need to. There are lots of people here who do understand. I have to say, when I was first diagnosed (July 26, 2011) I was petrified. I had not yet seen an oncologist. I had a friend whose sister worked for a surgeon and I needed a thyroid biopsy done too so I went straight to the surgeon after my mammo and US. July 21 I had a surgical biopsy. Got the result of IDC on July 26. Scheduled a lumpectomy with SNB on July 29. We jumped the gun. My surgeon was confident that it would be ER+ or PR+ so lumpectomy and radiation was all I would need. Had the surgery on the 29th. No node involvement. Clean margins, etc. August 3rd I went back for my follow-up appt with the surgeon only to find out that it was not at all what he thought. I came home and researched Triple Negative, Stage 1b (8mm IDC  with 8mm DCIS), Grade 3 and felt I had been given a death sentence.

I've come a long way since that day. My emotions have been from one extreme to the other and I am not usually an emotional person at all. Looking back, my go-getter attitude screwed me. I should have had a bilateral mastectomy. I still would have had to have chemo but no radiation. My opinion is that if you get rid of the tissue that the cancer likes to live in (ducts), why would it come back if there are none? I know I need chemo for any cells that may have gotten in my bloodstream. But could have avoided radiation if there was nothing left to radiate.

My point is: We all go through everythiing you are going through and it's ok. If you aren't comfortable starting treatment before testing, DON'T. It's your body and you have to live with the choices you make. Don't do like I did and rush into getting it over with only to find out that your choice is going to make the process longer and harder in the end. Do what feels right to YOU!

IslandGirl50

When I was diagnosed with BC I knew I wanted to have a bilateral mastectomy even before I knew I was triple negative.  The reason being that my mother had breast cancer twice - in the same breast, 5 years apart.  She had a lumpectomy the first time and mastectomy the second time.  I never asked the Dr's opinion - I knew what I wanted.  So, I had a bilateral mastectomy with reconstruction on 7/25.  I had my first chemo treatment 8/22.  I am going to have 8 chemo treatments scheduled for every two weeks.

My oncologist and my surgeon both said that I have this one shot at killing any cancer cells in my body.  If I don't get them at this time then there is never a cure for me.  I so hate this TN diagnosis.  I often tell my husband I could really be ok with this BC if it just wasn't TN.

I wish you the best with your decisions.  It is so hard.  Take care and remember you are not alone.

Flautalee

Hello - If you are scared, then I would recommend that you have a third opinion - it is very important for you to feel confident in your oncologist....you are trusting him or her with your life.  It sounds like you are having tests now to see if you have any metastatis which of course I pray you won't.  Also, don't blame yourself for not having a mammo last year -- I had a mammo  7 months before I found my tumor in 2000 (went into remission with 4 rounds of Adriamycin/Cytoxin) until this spring (almost 11 years) - last fall I didn't have a Breast MRI because the my insurance company denied it - said all I needed was a mammo - learned in March that because I was triple neg before the insurance companies are now paying for breast MRI's - I was told it wouldn't have showed up on the mammo - had the Breast MRI and Diagnostic Ultrasound and was diagnosed with a slightly different triple neg tumor June 2011.  My oncologist considers this a new primary tumor.

I began 4-6 rounds of Taxotere/Cytoxin last Friday (I will also have radiation afterward).  I felt very good until the night of day 3 when I started feeling nauseous and really constipated.  Feeling better now - day 6.  Re chemo:   I didn't question the chemo in 2000 or now, because, my mother, whose tumor status was unknown, was given the option in 1979 of chemo or no chemo.  (Surgeon wanted her to have it - oncologist said she had a choice - this was the currnent knowledge then).  She died in 1982.   I wish you the best - I see the moderator suggested you going to the DCIS link, I think.  Best.