Kat in the Delta

[kat in the delta]

1. ?= How many of you have had a(some) recurrence of your cancer after your 1st treatments? Add Where and When it came back? Please state your initial stage.

OR

2. ?? How many of you have been cancer FREE for more than 2 yrs.. from ending your treatments?? Add the initial stage.

3. What tests are used to monitor you ???

4. Did you have a GENETIC TEST ? to determine your line of therapy ?

[Mary Jo]

Hello Kat,

I did not have a recurrence.

I was dx Stage 2B June 24, 2005. Surgery July 28, 2005. Chemo ended Nov. 30, 2005. I received 4 dose dense A/C and 4 dose dense Taxol along with herceptin every 3 weeks for one year.

I am currently a 2 year 5 month survivor. That is 2 years and 5 months from my surgery date. I am 2 years and 1 month off of chemo and 1 year 2 months off of herceptin.

My oncologist does no scans. Symptoms warrant tests. I have had a Pet/CT 1 year ago - normal; I had an abdominal CT (ordered by GI Doc) 3 months ago - normal; I had a transvaginal ultra sound and CA125 done by gyn. a few months ago - normal; and a bone scan done this week - normal.

All these above tests were done because of symptoms. All but the Pet/CT which my radiation onc. ordered "just because he likes to do those after rads are finished."

I did not have any genetic testing done to determine treatment for me. I will be meeting with a genetic counselor January 30th but at this point not sure I will be going through with it. It depends on how our consultation goes. The genetic counselor isn't even sure I will be tested for BRCA 1 or 2. She said we'd discuss that at our consultation. She said my surgeon thought there would be "another mutation" I could have. I will not go that route though. BRCA 1 or 2 yes, because that would benefit sis and neices and I still have my ovaries but anything else, I don't think I care to know.

I will be anxious to read the responses to your post as well. Thanks for an interesting one.

Your "sister" on the journey,

Mary Jo

[Kimberly Lewis]

No recurrance 2yrs 5 months and counting. Started 3a, tested positive brca2 - tested with ca27-29, brain mri's and ct scans every 6 months or so...
Are YOU ok? I see that red thumbs down and wonder what you are mad about?

[Becky]

No recurrence and 3 yrs 4 months out. Diagnosed Stage 2A.

BRCA 1 & 2 negative. Still had ovaries removed for a variety of reasons.

Only have tumor marker 27/29 as monitor every 4 months. See medical oncologist every 4 months, rad oncologist every 6 months, surgeon once a year, gyne once a year, primary care once per year (or if I am sick and need to see a doc - ie : sinusitis etc)

[Sheila]

Diagnosed 2002 Stage 1
Recurrence 2003 Stage IV Mets to Lymph nodes.
In treatment since 2003

[Vi Schorpp]

Like Becky, I was diagnosed stage 2A in April, 2003 with vascular invasion. I decided to have a mastectomy for a variety of reasons and don't regret it. I have not had a recurrence and outside of seeing the oncologist every 3 months, I don't see any other doctors except as needed (besides mammogram and pap test).

[Jean]

Kat,
Very interesting questions, will be eager to see results, will you be doing a chart on this?

2 years and 9 months out from dx. Stage 1
No Recurrance
See onc. every 3 mo. have tumor markers done ca 27/29
Digital Mammogram every 6 mo. and alternate with MRI/or/Dilon every 6 mo.
See breast surgeon once per yr.
Have a chest CT once per year due to follow up on small nodule which has not changed since 4/05
See GYN once per year
See Primary Dr. once per year
No genetic testing

[Cathya]

Kat;

I am three years out and still NED. For the first time now I will be seeing my onc in four months....it has been 2 to 3 up to now. I do a Serum Her2 test every three months and regular blood work and tumor markers. I hope you are ok....I also worry when I see the thumbs down sign.

Cathy

[IRENE FROM TAMPA]

Diagnosed 1996 stage 2

Recurrence in 1999 with mets to liver (stage 4) and have been on treatments ever since.

[kat in the delta]

Sorry about the thumbs down. ( I thought it was a question mark.) ..but have changed it now.
I am interested in seeing the results,as well, and will try to chart it when done... unless someone else would ..- if you know an easy way.
So, let me know if you do. That would be GREAT!!

ANY VOLUNTEERS TO CHART THE RESULTS ?
{rsvp on this site, or privately}

Let's give it a few days or over a week to flow.... past New Year's Day .......
until the end of the 2nd week in Jan.

-Kat in the delta

[mcgle]

Very simply:

Diagnosed Autumn 2005 - stage 1, grade 2

Surgery, rads and tamoxifen by choice (no chemo or herceptin)

NED on two annual follow-up mammograms

See breast surgeon once a year for a 'poke n' grope'!

No genetic testing (dx postmenopausal), so don't think this is done for us old girls!

Mcgle (UK)

[mslinda]

Very interesting repsonses. Hope more of us respond to this thread.

I will be 3 years NED on 1-5-08. A few scares during this time, but everything worked out o.k. I get whatever test I request. But have graduated to seeing my Onc. every 6 months now. With her standard blood work. I don't get tumor markers done. My Onc. doesn't do them. I will see my breast surgeon in February, and am sure he will start seeing me annually. I get a mamo and MRI alternating every 6 months. The rest is in my signature.

Happy New Year to all.

MsLinda

[suzan w]

NED so far...2 1/2 years from surgery, 1 yr 2 mo since last herceptin. On arimidex for 5 years ( started 1 yr. 2 mo ago). Haave onc visits every 3 months (now every 6 m o) for the first 2 years...no scans, unless I ask for them. Have blood work done every 3 months, including CA 27 29. No genetic tests. Have CA 125 every year

[TriciaK]

It is good to see you post, Kat---I have missed seeing you often! This is an interesting thread and I also hope to see final results .Here is my info to add:
*Spring 1985--diagnosed with in situ BC, right breast (age 56)
* bilateral mastectomy because of calcification in left breast
* silicone implants
* October, 1985--My only sibling, age 53, died after fighting BC 7 years
1985-1990: I AM CANCER FREE FOR ALMOST 5 YEARS
*Spring 1990--mets found in T9 and T10 vertebra
5 YEARS OF TAMOXIFEN,BECAME VEGETARIAN, LEARNED
PSYCHONUEROIMMUNOLOGY, SELF-HYPNOSIS.
CANCER FREE ALMOST 15 YEARS !(no treatment, no tests)
*June 30, 2004-heart attack
*July, 2004--CT scan prep for heart surgery reveals her2 cancer in lungs
*6 months navelbine and herceptin with 9 more months just herceptin
Ejection fraction dropped to 30--herceptin stopped
* May, 2006--Triple bypass heart surgery
* December, 2007-- CANCER FREE SINCE 2005
TESTS: CA15, regular blood tests, PET/CT every 6 months
No genetic tests
Hope this is helpful! Hugs, Tricia

[Ruth]

I am 4 1/2 years out from diagnosis and 3 years and 4 months from the end of my herceptin...no recurrance. I see my Onc. every 6 months with blood markers drawn, no scans other than mammo on remaining breast & breast MRI. I think he will switch me to once a year when I get to the 5 year mark. I was stage 3....

No genetic testing done.

Hugs ~ Ruth

[bashmaz]

Diagnosed stage 2 April 2002, lumpectomy, ACx4, Taxolx4, 37 rads. Chose not to do Herception trial. See onc. every 3 months, no tests, no blood work, just questions about how I'm feeling. Annual breast MRI & mammo.

2004 UW vaccine trial.

BRCA 1&2 negative.

Currently in Teach trial for Tykerb - sure I'm on placebo.

So far, so good!

Marianne

[Lolly]

-Diagnosed Sept. '99 Stage IIIB, ER/PR- HER2+++

-Recurred to lymph nodes and chest skin Jan.2001.

-Have scans when progression is suspected, otherwise annually. CT's w/contrast, PET/CT, lung X ray's, bone scans, brain MRI's.

-CEA has been run occasionally but other than at first recurrence when it was 10(quickly came down to under 3 after Herceptin/Navelbine) has remained well under 3 for years now, so is not considered reliable for me. It was run when this latest progression heated up, and was under 2.

[Gerri]

Dx'd Nov 05 Stage 2A, ER+/PR+, HER2+++ - no recurrance

Chemo Jan 06 - April 06, Herceptin until March 07, on Tamoxifen until I go into menopause then will switch to an AI.

Genetic testing negative for BRCA1 & BRCA2

Mammograms once a year, had one breast MRI will have another after 6 months. Echos every 3-6 months. Will have bone scan next week due to hip pain.

No routine tumor markers or scans, but onc will do if symptoms present.

[Becca]

Dx'd Oct 98 with Stage IIb--3 mo checkups with yearly mammogram, chest xray, bloodtests. No regular scans unless I complained of something like blurred vision, or backache. Scans were always fine until...

Recurrance over 7 years later in 2005 in abdominal lymph nodes with almost continuous treatment for now over 2 years. Scans now as onco thinks needed.

[Chelee]

Kat, I was DX 12-20-05. Had surgery on 1-3-06 when I was officially DX stage IIIA. I've been cancer free since that time. (Knock wood)

However I finished my chemo trts in June of 06, & my yr of herceptin in March of 07. So techically I will be two years out on 1-3-08....but I'm only 9 months out since I finished herceptin. (

I did not have any genetic testing.

As to tests I get my CA 27-29 & CBC ran every 3 months. I also have other issues going on that require me to have my FSH & estradiol ran every 3 months and some times sooner. I have a CMP ran some where between 4 to 6 months. I have a brain MRI every six months. I also had a PET/CT every six months since first DX. (I only get the PET/CT scans because I request them.)

Chelee

[tousled1]

Kat,

My history is in my signature. Since I started Herceptin my oncologist and I have used the HER2 serum test to monitor my progress. Tumor markers have not been reliable for me. When I was first diagnosed tumor marker as 15.3 and it is currently 15.1 and I'm now Stage IV. I have CT scans of the brain and chest every 12 weeks to check progress. Hope this helps. I was only NED for 3 months before I developed METS.

[CPA]

2 yrs NED (everything below with signature)

[Paris]

I am still on herceptin so can't weigh in but do have a question. Are there any stats that show recurrance rates of patients that were in the Herceptin clinical trials? Long term, i.e. ten years out from completing treatment, do we know how we are going to be?

Jamie

[AlaskaAngel]

Stage I, 1.6 cm IDC with some DCIS
CAF x 6
Radiation
No Herceptin
ER+, PR+, HER2+++

Over 5 years out. See PCP for annual physical exam and breast check. Get standard mammo annually. Last onc visit at 4 years out, no more planned visits with onc. Saw surgeon at 4 years out. No more planned visits with surgeon.

AlaskaAngel

[jones7676]

Diagnosed Stage IIB Oct 03 Chemo until Early Spring 04. Diagnosed Stage IV Lung and Bone Mets Dec. 05. (So, over 2 years from surgery, but not quite 2 years after chemo). Went about 6 months without treatment after 2nd chemo, and have been undergoing some type of treatment ever since.