Information from those with small size tumors at diagnosis
 

A question for all of the Her2's that were originally diagnosed with a small tumor, stage one.

Please post any information that you think others that are confronted with a similar diagnosis would find helpful. Age, size of tumor, treatment, all the info about the tumor, etc.

I will go first. Most of the info is found in my signature. I am just over two years out with a 9mm tumor (was thought to be 4 mm prior to lumpectomy) and NED. I was 60 years old at the time of diagnosis.

My signature includes my diagnosis & treatment so far. As you can see, while still on Herceptin I developed a recurrence. Today I go to find out the result of PET/CT & biopsy to see what I need to do next.

So I was initially Stage 1, now I'm not sure.

- Anna

My history follows:

as you can see by my signature, I had a small tumor...glad you started this thread, will be interested to follow it!!! Right now I am wondering what types of scans I should have for follow-up. My oncologist does not believe in "routine" scans in a case like mine (early stage...etc.) but says any scan I want to have, she will order it.

ps. I was 54 yrs old at time of diagnosis!

I didn't have any scans during treatment or after, until the recurrence was found. My onc. said for early stage the only followup would be bloodwork, physical exam ev. 3 months, and how I was feeling. She said scans can have false positives.

Because of the lump I found my onc. ordered a whole body PET/CT.

- Anna

p.s. 49 & pre-menopausal at initial diagnosis.

My dx and treatment (or the lack of) follow. I just saw my onc yesterday and we discussed the possibility of metastasis. He said that for HER2 positive patients, the recurrence, if it ever happens, will be from 18 to 24 month on the average. For HER2 negatives, the danger zone is about 4 to 5 years. The micro invasions will take that much time to build up to the point of detection or symptoms. Whether I got chemo or not, the consequence is only a few percentage. For the risk of improving that little margin of advantage, the trade off is the danger of chemo and radiation. Of course, my option of doing mastec shifts the odds in my favor for a few points. Overall, he had no objection to my own decision. I work in a large hospital and have seen many cases.

I was 35 and premenopausal at diagnosis. I had 4.2 cm of DCIS grade 2/3, and 7mm er/pr- her2+, SBR grade 2 (6/7), mitotic count of 1, sentinnel node negative, no lypho/vascular invasion, no neural invasion.

5/05 clean PET/CT scan clean other than left breast
6/05 bilateral mastectomy, one side of recon failed with infection
8/05-11/05 4 AC
11/05-12/06 Herceptin for 1 year
10/05 head CT scan and chest xray both normal
3/06 bone scan normal
10/06 transvaginal ultrasound normal
11/06 abdominal CT normal
12/06 chest xray normal
1/06 bilateal DIEP reconstruction

1.6 IDC,DCIS HER2+++,ER+,PR+, no Herceptin
 

By small, do you mean stage 1/under 2 cm, Janet? If you do...

1.6 cm IDC with DCIS
HER2+++, no FISH, ER+ PR+
Age at dx, 51
NED following CAF x 6, IMRT, hormonal treatment
5 years out
1 brain MRI last year for vertigo/falling plus mildly elevated LFTs (normal)
annual mammos
1 bone scan at dx, 1 bone scan last year
1 DEXA scan
2 chest/abdomen CTs (normal) for unresolved right-sided pain
1 chest MRI (normal)

AlaskaAngel

You can see below my Dx and treatment plan.....

Best of luck!

Here's mine...
 

Take care and God bless.

Rhonda

Heres mine

Stage 1 .7cm tumor or 7mm
Stage IV 16 months later
The rest is below

Glad so many are posting. I hope you that haven't posted will do so.. Angel, any in the stage one range would be appropreate. It might be worthwhile to have a permanent posting of this so the newbies could find immediate answers to their question. There is so little time for them to make decisions. Could also be one for the other stages women are diagnosed with and their treatment since that is a common question asked.
Thanks all

Hi,

Below is my information:

Age: 49 - premenopausal
Stage 1, node negative
1.3cm tumor with DCIS 1mm from chest wall - thought the tumor was 8mm before surgery
Lumpectomy
er+ 95%, pr+10%
Her2+
Dose Dense AC and then T
Herceptin for 1 year every 3 weeks
35 rads
Aromasin for 5 year
BRCA1 & BRCA2 negative
12th person on my mom's side to get bc

Hi:

I was 55 at diagnosis. Post menopausal. Hysterectomy at 45 with ovaries removed. I took estrogen for 10 years, but I was er/pr-. You can see my diagnosis below. I have had 2 bone scans, 2 muga scans, 4 chest x-rays; 2 ct scans, and mamo's every 6 months. My onc. does what I want. She also tells me I worry too much. But if I don't stay on top, who will? My surgeon told me at the time of surgery that having a mastectomy was overkill as I had large breasts. Now, he tells me that he should have listened to me and removed the breast. I had a radiation burn that had to be removed, so now my breast is full of scar tissue and necrosis. It is still very painful at times. Oh well! So that's my story. Hope this is helpful to someone.

Linda

When I was first diagnosed, I went into an "OMG! Who is gonna take care of my kids when I'm dead?!" depression. I would cry all the time and for no reason in particular, except the thoughts and fears consumed my every waking moment...and the ones whenI should've been sleeping. The best and worst thing I did was get on the internet, pull out all my nursing books, and start researching. Most, if not all of it, was frightening to say the least, but looking back now, 7 months since diagnosis, it was the only control I had over this disease at the time and it answered many of my questions that the oncologist didn't take the time to explain in depth during my first appointments. The best and only good part about being her2+ is that I found this site and all the knowledge and experience here.

Also, I've found that those around you want to support you, but cancer carries a stigma that death is imminent and that's just not true. I had great friends avoid me in the corridors at work, but at the same time, complete strangers have walked up to me and hugged me, wishing me all the luck in the world.

It's easier for me to look at breast cancer as a chronic disease, like diabetes. With the right care and treatment, healthy habits, and good support and medical care, we can live with this disease...and I mean live, as in thrive, not just getting by. Some days you may have to take one day at a time, but the diagnosis itself is no reason to quit life.

Nuff on that :P

Diagnosed at 36...
Found a tender lump between my breast and armpit while rolling over in bed on 7/29/06. AUG. 8, 2006
Core needle bx showing DCIS grade 2

AUG. 24 2006
1.5 cm IDC grade 3(9/9) HER/2+ (amplified, 2.5), ER <10 %, PR negative
w/ grade 3 (9/9) DCIS AND LOBULAR CA TO LUMPECTOMY MARGINS. Right breast clear

OCT. 4 2006
BILATERAL MASTECTOMY 16 of 16 NEG NODES Decided to have bilat mastectomy to reduce chance of recurrence in right breast since lobular ca was also found in left breast.

STARTED AC NOV. 4 2006- blood counts have been great, even at my worst
Finished AC January 8!!!!!! Had PET and bone scans late January due to liver function tests elevations, both were clear. Started weekly Herceptin and taxol January 29th and I went back to work February 4th. I feel great, except some mild rib, sternum, and wrist pain. I start tamoxifen after taxol completed and am considering oopherectomy later in the year. From where I stand now, I wouldn't have done anything differently. Life is good and I intend to make sure it stays that way.

I know this is long, but I'm windy, what can i say??:P

Diagnosised by a fluke on Sept 14, 2005 at age 43 -
lumpectomy right - two tumors 1.2 each 0 with one focli. no vascular invasion, sentinal node negative. Reexcision 1/15/06 b/c of question on the originalpathology report - margins came up perfectly clear !

I year of herceptain finished 11/01/06
lupron monthly
arimidex.
No scans except bone density -
achy from arimidex but much better now off herceptain.
Oncoogist beleives greatest chance for a reoccurance is in same breats

MRI 5/06 - clear
digital mamo 12/06 - no change
keeping fingers crossed for MRI scheduled for 5/ 07.

blood work very three months and exam by two separate oncologists

Here is mine...on herceptin since late August, 2006.

forgot to list my age...55

Janet Great Idea :-)
 

Hi,

Will soon complete my 1 yr. of herceptin (two more to go). My signature and
treatment profile is listed below. Prior to dx. I would have a yearly digtal
mamagram. Had my yrly Ditgtal Mamo in 9/04, seven months later I began to have a a pain and ache deep in my right armpit. It continued for over a week so I contacted the dr. who does my digtal mamo and she told me cancer does not hurt. I went in for another digital mamo and she found a 6mm tumor.
Since dx. 3/05 I now alternate between a digtal mamagram and MRI every 6 months. After lumpectomy I was concerned that there could be additional tumors that could have been missed. I decided to have an MRI 3wks. after lumpectomy to confirm status of both breasts. I then had CT/PET scans to insure that there was no cancer anywhere else. Dr. are following and tracking a small 5mm nodule on my right lung which they believe has nothing to do with bc dx. I had broncular pneumonia twice and it could be scarring from the broncular pneumonia (I sure hope so). It has been stable. The dr. did not recommend additonal treatment in view of the tiny size of my invasive cancer which was 3mm - no angiolmphatic invasion. The DCIS was predominantly cribriform type with necrosis, well differentiated. The more I researched and learned about her2 cancer the more concerned I became. My nodes came back negative but there was the possiblity that a T cell could travel through the blood system. I requested the Oncotype DX test. This was considered new to my onc and dr's., the Oncotype was not part of their bible. I still requested the test. I waited for over a month only to find out the Dr. did not send the sample out as requested. I was very annoyed that the dr. did not do as I had requested, I changed oncs. When I did get the test results back and the recurrance score was high risk I flew out to Calif. to see Dr. Slamon. He advised chemo/herceptin. He felt my dr's in NY had "missed the boat" unfortunately I was on that boat!

Through all of this from the first pain and ache in my armpit to the voice
in my head telling me to continue to search (thank god I found this forum)
I know that the presence of God has been protecting me and watches over me.

God Bless All Of Us.

Age 54
Annual scans NED

Age at dx: 52, postmenopausal

4/19/06 - annual mammogram, recalled for additional views
4/27/06 - dx mammogram + ultrasound, results "suspicious for cancer" (architechtural distortion and microcalcifications noted, no lump felt)
6/3/06 - excisional biopsy
6/6/06 - dx IDC 1.3 cm, 9mm invasive, 10% DCIS, ER+ 80%, PR+ 50%, Her2+++ by IHC, Ki-67 11% (borderline normal), grade 2, Bloom-Richardson score 7, 1 positive margin
6/23/06 - rexcision for positive margin (no additional cancer found) and sentinel node biopsy, SNB negative, stage 1
8/14/06-9/29/06 - rads 33 treatments
8/17/06 - Herceptin every 3 weeks for 1 year
10/1/06 - Femara daily; switched to Arimidex 12/06 due to severe tinnitus, to continue for 5 years.

Hopeful

Hopeful, did the doctor recommend chemo for you? I have heard they maybe switching to the anti estrogen drugs for you ER/PR positives. If you could expand on this, I am sure that others with like turmors would appreciate it.

Janet,

Two oncs reccomended chemo to me, one at a major cancer center, and the onc I am treating with. Based on my research and what I thought was right for me, I declined. I chose my onc, who is in private practice, because he was willing to treat me with Herceptin without chemo. At the time I started my infusions, Herceptin was still only approved for use in metastatic bc patients, and the doctors affiliated with large hospitals or major cancer centers would only prescribe it in accordance with the protocols for the trials of Herceptin as adjuvant therapy in early stage patients, and all the protocols included chemo. He was not bound by any internal administrative rules, and my insurance covered it, so we went ahead.

My onc and his associates have one of the largest private practices I am aware of. Once a month, they have a lunch program in house, where they invite one or two of the oncs from local major cancer centers to do presentations to them and answer questions about treatment. So, I feel that they are as up to speed as any of the docs in the larger centers. Also, I am examined by the doctor every three weeks when I go for my infusions, and have the chance to discuss new drugs and therapies with him. I don't know if other patients get that much "face time" with their oncs.

I know this is a non-traditional path to follow, but my doctors were satisfied I had done good research and was making an informed decision. In the end, the choice has to be one we can live with. I am very satisfied with my treatment plan.

Hopeful

Signature is below. Update, had six month mammogram a week ago. Looks okay. Tumor markers are beginning to go down; still a bit above normal.

Age at diagnosis was 55. I had to stop Herceptin because muga dropped 16 points. I was comfortable with stopping at 9 months. Because I was stage 1 with a small tumor, oncologist tried to balance risk to my heart with the risk of cancer recurring. I asked him, what if cancer recurs and I have to take herceptin again? He said in that case, the risk of cancer would be more dangerous than the risk to my heart.

Age 59, post menopausal, I will be finished with my 33 radiation treatments March 6. Refused A/C plus Herceptin at this time. Carol H.

I was diagnosed at 62, June 2006, Stage I, Size of tumor 1.7cent. I had a
lumpectomy, clean margins, no nodes, grade 3, ER+, Pr-, Her2 positive. I had
four A/C's, Radiation 33, Herceptin for one year, now in treatment, and Arimidex
for five years. I have had a chest X-Ray and blood work but no scans. Interesting reading all the other post and the different treatments. I always wonder if I'm doing enough.
patb

Dose Dense A/C with Herceptin
 

Always something to confuse us.
In one of the articles posted today, some doctors feel that if you go dose dense A/C, which means every two weeks not every three for the infusions, you will have less heart problems and therefore Hereptin could be given afterwards. Since studies have shown that A/C works better with ER/PR negatives, than positives, we should consider this regime.
Wonder if they will do any studies on this?
Scroll on down to Track 17.
http://www.breastcancerupdate.com/bcu2007/1/norton.asp

Janet - great idea....
 

starting this thread, a big thank you.

Jean

More in support of TCH from Lani
 

http://her2support.org/vbulletin/showthread.php?t=27239

When considering AC, the above study certainly sides against AC and for TCH. At this time I don't know if AC was given every three weeks or dose dense. Please go to this link to follow the discussion

Most of my information is in my signature.

Karen

Great Thread...Info in signature

Age 66 at diagnosis (March 9, 2005). Stage 1, high grade idc tumor (.5cm), negative sentinel node. Lumpectomy times 2 to get clear margins.
HER2+++. ER+++, PR+. AC x 4, RADS X 30. Herceptin every 3 weeks for 1 year (finished July 11, 2006). Arimidex for 5 years.
Onc does not routinely do tumor markers as he feels they are generally unreliable. Also no routine scans etc except mammograms on affected side every 6 months and bilaterally every year. Scans etc only if symptomatic.
Marlys

My pathology - small tumor
 

I too am 54 at the initial dx. Seems that we have a lot of company in this "theater"
See my signature for patholgy.
Melinda

Having 2 primary cancers, I would be looking at genetics...

Most of my info is in my signature. The only part left out is that I have a p53 gene mutation that was inherited. I had 2 primary cancers. The invasive cancer was in the left side, the DCIS was in the right side.

To bring this to the top for newbies to see and post
 

Just want to make sure that those of you new to the group can see this thread and post if it applies to you or you have new information.
Hugs
Janet/FL

Hi all,

You can see everything in my signature.
Thanks
Caya

i really should add this to my signature


dx at 49
7/05
.9cm rb
1 sentinel node
grade 3
sphase 6.8%
brac 1 and 2 negative
er-, pr-
rb mast 9/05
ac
taxol with herceptin
no rads
herceptin for one year ever 3 weeks, completed 12/06
lb prophilactic mastectomy 12/06
saline implant in rb 9/06
saline implant on lb in 4/07
ovaries removal in 4/07

I've asked Joe, the main man! to place some for of access database so that we could search for those of us with similar dx. Poor Joe, I know, easier said than done!

MCS ( maria)

small tumour at Dx
 

Hi,
I was Dx at age 45(Feb 2006):
1 cm, grade two
negative nodes
ER+, Pr+, Her2+
Treated with:
4 cycles of AC
30 rads
2/3 done my year of Herceptin ( finishing in July)
presently on tamoxifen
having ovaries out in June and then will swithch to Armidex

Nancy