Triple Negatives are Different-Scans Anyone???

Livvienigelmom - none of my doctors focus on mine being triple negative either.  My medical oncologist really just says because it's hormone negative there won't be any hormone therapy after chemo and rads. If it wasn't for that reason, he probably wouldn't have given me the option of chemo. I met with the radiation oncologist the other day to talk about rads, which I'll be starting in March.  I had the option of participating in a trial for partial breast radiation in only 5 treatments.  I said given that I was triple negative I thought my best bet was to do the whole breast over the longer period (standard radiation treatment).  He said he has absolutely no problem or concern with me doing the shorter treatment with TNBC but said if I feel more comfortable with the longer treatment, he's fine with that, too. 

Well, I was about to ask a similar question about having scans done this summer....

My onc said TN is not standard so we'll take cues from other treatment and follow up scenarios then do our mutually agreed upon own thing.  We agreed to kinda act as if my BC was1/2 to one stage worse than it is/was.

  I had bone scan, and chest + ab CT scans between chemo and rads, 3 months after rads were done, and 9 months after that.  Now I'm at 1 year since last scans ( almost 3 years since surgery)  Onc says he really wants scans spring of 2011 ( 4 years)  and sooner if I show symptoms or just would feel better knowing.  Now I'm trying to decide wether to have scans done this summer.  Blood test were every 3 months, now 6 months.

In addition i had diagnostic mammo + ultrasound every 6 months for the first 2 years. Now I'm back to one diagnostic per year.  The images are reviewed by the radiologist, surgeon.   Onc  and rad onc get copies, but usually only look at the report, I think  . I'll continue to see the surgeon for thorough clinical exam every 6 months for at least 4 more years. 

Have to give my 2 cents. I'm 23 years out now, I did get a second primary cancer in the other breast 6 1/2 years ago. I am also triple neg. and never had any scans and very little follow-up. Believe it or not 23 years ago if you had clear nodes there was no chemo. I did however have 6 weeks radiation because the first time I just had a lumpectomy. Second diagnosis was 2c. therefore they deemed me stage 2. Nodes were clear again and I opted not to have chemo. That was my decision. I just had a bi-lateral mastectomy. I have no regets with my decision and you all have to be happy with decisions you make. My own opinion now after 23 years is that I am glad I had TN breast cancer. Would hate to have to take Tamox and after 3 years we are better off then ER+ sisters. They even say after 5 years, or maybe 8 years were CURED. Ladies look at the good side and now that I'm going to be 64 in June when I was first diagnosed I was 39, that would be alot of lost time if i worried for all those years.

Let me chime in as a Stage IVer.  The problem with scans is that they are frequently indecisive.  Only a biopsy can tell you whether or not it is cancer.  Also, if scans are not medically indicated, you may end up paying the entire amount yourself.  My most recent PET/CT report noted a pelvic fracture but stated while "a metastic lesion cannot be excluded, the findings are more suggestive of a post-traumatic fracture".  Had to do a biopsy (which is not pleasant because they are having to get into the bone).  It turned out to be positive, but had it been negative, it would sure make me think twice the next time I got a scan.

Hi all...I get scans every 10 -12 months, sooner if I have symptoms. I had my first set 2 wks. after the dx, the second set 2 months after I finished chemo, and my next set coming up in mid March.  I stress about having the scans, and I would stress not having them.  It's a catch-22, but I would rather have them than not. The last appointment with my ocno he stretched my appts. from 3 to 4 months, and I see my BS every 6 months.

Anna

Hello Ladies.....

As you can see my signature below.....I am 36 years old. I did have a double mastectomy prior to Chemo. That was 5/21/2009. I chose to have them BOTH removed. Just made me feel better...I took a three week break from surgery to heal. Then I began Chemo. I did 12 weekly Taxol and ended treatment with 4 Tri-weekly FAC. I took another three week break and started radiation. I have completed as of today....#31 of my 32 radiation treatments.

Yes tomorrow is my graduation day from radiation....STILL NERVOUS ABOUT THAT......

My Bs scanned me prior to double mastectomy.....It was like two weeks prior to surgery. She called and said....IT FEELS GOOD TO BE AHEAD OF THE EIGHT BALL....

She stated about 2.5 to 3.0 cm...and does not seem to have ANY NODE involvement. She said I will do SNB during surgery to check them...I said OK....GOOD..

Well went into surgery came out with NO breast....a 4.7 cm Tumor and 3/13 positive nodes. I WAS SHOCKED.....did this stuff MOVE that fast in TWO weeks?????? Or are scans THAT accurate????

When I started Chemo...My Onc. went by the scans the surgeon did and said all clear at this point. Did all the chemo and off to Rads.....She did not do anymore scans...

My Radiation Onc. said at our first meeting he wanted to schedule a pet scan since it had been almost 7 months since any scans...I said ok....and BOY WAS I NERVOUS.....

Dec. 14th....scan was done and all clear.......THANK YOU JESUS!!!!!!!!!!!!!

I still have my port and have to go do a port flush monthly. My Oncologist said she wants to see me every three months to do lab work and check up.....The blood work being for tumor markers. She said the standard protocol is NOT to do any scans....She did say although SHE will do them every 6 monhts....I said OK....

She did address the Triple Negative Thing. The very first meeting she said (you are what we call TRIPLE NEGATIVE) I had already known that. Got Pathology report from surgery and STARTED THE GOOGLING......

She said SOME are good SOME are bad....I said well do I have GOOD OR BAD...she said we just DONT know.....because the tumor is GONE....removed and out of your body.

She said If We can get you to two years and keep it away your reoccurence goes way down. I was so terrified as all of you know. I asked her MANY questions....she continues to say WE JUST DONT KNOW.....although she did say that She has several patients that she has seen for YEARS......that had MORE lymph nodes than me and they are STILL cancer free. I said OK....

She said you can rest in this....THE GREATEST MINDS IN MEDICINE ARE WORKING ON YOUR KIND OF CANCER!!!!! I thought crap THEY BETTER HURRY......

I am curious about one thing.....WHEN THEY DO A PET SCAN....does that also SHOW the brain?????? Just kind of curious. I assumed it does.....

Of course I will do NO MORE mammograms....as I have NO BOOBS.....

I only did ONE....that was to confirm what the heck that was I found in my breast....

MAY GOD BLESS US ALL 

This is my issue of the week!!! I am a year and a half out from ACT chemo and have a 6 mo follow-up with my onc coming up on the 12th. I was expecting a scan, but am only scheduled for a blood test and to see PA/ORN. I was pretty wild about that and called them. They said they only scan if I have symptoms. I figure by the time I have symptoms it's all over and perhaps a scan would show a problem sooner than if I wait for the pain of symptoms! Afterall, I had no symptoms with my breast tumor and it almost killed me. Plus I don't want to drive all the way over to the cancer center on 50 miles of icy roads for a lousy blood test. I could do that locally and fax info to them. What am I to say to the onc nurse when she asks how I feel? "Fine, I think."!? How do I know or anyone know what's going on without a scan? Now i'm thinking maybe it's a money thing. They'll charge my account for a onc follow-up even if I don't see onc and it's not much of a followup.

I, too, need to avoid being oppressed by the tyranny of positive thinking. My family prefer I never talk about my cancer at all. That would make them feel much better, I'm sure! And they are all adults with no young children involved!!! I'm glad I have a place like this to come when I need support.

Maineartist- I would think with you being stage IV that you would be getting scanned frequently so they can follow your progress of the mestastic cancer. I don't blame you for being upset.

cwrightrn....not to sure about what your onc said is quite right about the type of cancer not being as important as tn or hormone positive...

If you go to lifemath for breast cancer/therapy (not sure how accurate it is)...you  can put in there stats and treatment....I messed around with it..putting different types of cancer in with the same stats and treatments and well...there is a difference in the 15 year outcome...Yes..triple negative is agressive, but tumor size, nodular involvement are pretty important too when it comes to outcome.

Thank you for this post.  I had been looking for such a calculator.  In march 2 drs told me it was a cyst.  Well thanks doctors, my life span is now 6.9 years shorter.  This does show that I am medically worse off for my malpractice suit.

K - I know what you mean.  I had my one year diagnosis last month, but couldn't really bring myself to celebrate that.  Is that really a day I want to remember?  I haven't had any post-treatment scans and my onc is not willing to do any for my peace of mind.  It's so hard not to jump to conclusions with every ache and pain.

I have to jump in here for a minute...I am triple neg..39 and getting ready to have a pet/ct scan in a couple weeks. My onc stated the scans will be used as follow up for me. Triple neg is indeed serious. It is very aggresive and to see it dismissed is maddening to me.

My BIGGEST worry is having NO symptoms and finding it to late..At least w/ the scan I feel a little better. I know it can't detect tiny but it may get me into treatment sooner than later. I had almost a 7cm tumor growing in me and felt just fine. AFTER dd tx ACT they removed a shruckin 2cm tumor and 2 nodes still had remains in them. So who knows how much excaped? Or how many nodes tested + at the begining? Also I have heard that w/ 3- it really dosent matter on the node involement that its mode of transport is the blood. That is why it is so fast moving.

My Mother, Grandmother, Grandmothers sister and daughter have all been taken by this disease and I am NOT about to go quietly behind them.

Hi Carolinachick...I think my physician looks at me, a nurse, and knows that I know how high my risk for recurrance is with an almost 2 cm mass and 4 positive nodes. I needed to know that I was OK at that time. I do have very good insurance and don't even need pre-authorization for the PET/CT. I know that I am very fortunate. I actually upgraded my coverage the month before I found my lump! Good karma!

Trying to stay warm in MD.

 Kathy