If you fit this profile EXACTLY please respond.

[Jean]

Stage 1
Node Negative
Grade 1 Tumor
ER Positive
Pr Negative
Her2 Postive +++
Small tumor under 1CM

What was your treatment?
Are you taking herceptin?
Did you have any Chemo?

I am attempting to connect to a group who has this profile and is or is not
taking herceptin. Please do not reply if you are NOT ER POSITIVE.

Many thanks to all.
Jean

[karenann]

Hi Jean,

I thought I would reply even though my tumor profile does not completely fit what you are asking. I was diagnosed with the following:

stage 1
er+ 95% /pr+10% (weakly positive)
grade 3
1.3cm tumor
node negative
Her2+++

I did: dose dense AC then T, 34 rads. I am currently on one year of Herceptin and five years of Aromasin.

Hope this helps.

Karen

[suzan w]

Hi Jean

almost the same!!
stage 1
node neg
Grade 1 tumor (7mm)
ER+
PR+ (different than you!)
Her2+++
invasive lobular
treatment: bilateral mastectomy (June '05)
4 rounds of A/C
currently doing Herceptin for a year-every 3 wks (started Oct '05)
Arimidex for 5 years
Best to you, Suzan

[mts]

Hi-

I was dx'd Stage I in 2004
Er+ 15%
PR-
Node Neg
Her2 +++
tumor grade 3
Tumor size 9mm
I'm 43 yrs old

later found via mri two more tumors .4 and 1.6 (that were not visible on Mammo and US)
Lumpectomy X 2
had dose dense AC+T and then rads. Currently on Tamoxifen and Herceptin
maria

[DeborahNC]

Stage 1
Node neg
Grade 2
ER+/PR-
Her+++
.7cm IDC

With this recurrence I opted for bilateral mastectomy. Had 9 of recommended 18 Taxol/Herceptin infusions. Now on Herceptin every 3 weeks through October.

[Jean]

Suzan W.

Many thanks for sharing your profile. My tumor was almost the same size as yours, 6MM and half of it was removed during the biopsey. I had a lumpectomy
April 05, 32 x radiation. I am also on Arimidex My doctors did not recommend
chemo or herceptin - even though I asked...and asked...and asked...
they believe the risk out weighed the benefit. I see my onc. on 4/19
and I want to go in with additional information regarding the herceptin.
I believe last year there were not any women who went on herceptin
without having had chemo? Not sure - that is one of the many reasons I posted the profile request. Your treatment seems aggressive for a small tumor
is it due to the Pr+ ? I had wanted my dr. to treat me aggessively since
I do not want this coming back. How are you feeling while on the herceptin
treatments? Do you have any joint pain from the Arimidex?
Thank you once again for answering - I really appreciate your input - all the informaiton we gather is so vital. Wishing you all the very best!
Jean

[Jean]

Hi DeborahNC,
Thank you for responding to my profile request.
You mentioned that this was a recurrence. Would you mind detailing
that portion. What was your first dx? and treatment?
Hope your feeling well during your herceptin treatments.
Many thanks and sending all good wishes and prayers.
Regards,
Jean

[Jean]

Hi Maria,

Thank you very much for responding! Did your dr. recommend the chemo and herceptin due to the grade of the tumor - or did you request that treatment?
You mention that "later" via mri two more tumors were found. Did you have the mri soon or right after the inital finding of the 9MM tumor? I am quessing the dr. may have recommended chemo due to the additonal tumors? This will assist me greatly. Wishing you all the best and many thanks for sharing.
Jean

[DeborahNC]

Jean,

My first dx. was in 9/03; DCIS, ER+, Stage 0. Had lumpectomy, 33 rads, refused Tamoxifen on a gut feeling. I recurred exactly 2 years later. Onc will add an AI as I was chemopaused in November and am 52.

edit to add the original DCIS was 2 cm.

[mts]

Jean,
I had my 2nd lumpectomy 3 weeks after my 1st lumpectomy. Yes, the MRI was done AFTER my 1st lumpectomy (one of those little voices in my head told me to get more diagnostics). Turns out that my cancer is occult under Mammos and Ultrasound). I often wonder how many women with local recurrence are really undetected original tumors to begin with... PLUS, my margins were CLEAR after the 1st lumpectomy. The surgeon's mouth dropped open when he saw my MRI report...
As for my chemo -I was to start out with just AC +T every 3 weeks for 6 infusions. The onc at the time felt that my young age (41 at the time) and excellent health and two little kids at home would make me a good candidate for aggressive chemo. I wanted big guns from the start.
Once the other two tumors were found, my Tx plan changed to dose dense AC+T with 8 infusions. The onc added the total size of all tumors and categorized me as Stage II. This new Stage gave me the ammo to get Herceptin.
At first, I could not get Herceptin anywhere, until the ASCO conference in May 2004 verified data stating the efficacy of the drug in all stages. By then I had hounded everyone for it and fortunately, this site showed how many women were getting the Herceptin and it just gave me more fuel to press on. I doubt any oncs would have offered the Herceptin on their own. I went through 3 oncs before I could find the ONE that would. I actually began the Herceptin 3 months following my chemo. I am schedulrd to finish by Herceptin Tx in Aug 2006.

Maria

[Unregistered]

Wow Maria,
Good for you that you listened to that little voice and had the MRI.
I did the same thing immediatley after my lumpectomy. Nothing came up
and the test came back clean. But my onc and surgeon thought I was
over the top doing the MRI..but just look at what happened to you. That MRI completely changed your status. That was a major concern of mine.
Do you have any information of anyone getting herceptin with the stage 1
status no nodes, etc. who did not have chemo? Maybe somthing passed
your eye that you could share. I am seeing one of my onc. 4/19 and a new one later on this month. So far no one wants to treat me with herceptin.
Even though I request it.

Good luck with the herceptin treatments -
Jean

[mts]

Jean,

I recall in October of 2005 there was a thread about non-chemo Stage I's who instead were getting Herceptin. the thread had been started by "panicked911".
She opted for no chemo (I believe she had other health issues that would make her chemo dangerous).
By the way, one good argument for getting Herceptin is if your ER/PR is positive BUT LOW or all together negative. My ER is 15% pos and PR is totally neg. I know this was a factor in determining Herceptin due to Tamoxifen being of relatively low benefit (although I do take Tamoxifen for that miniscule benefit) Also, the fact that I was 41 with two young children at time of Dx.
You know Jean, at this stage of the treatment plan it would seem to me that there is an onc out there that is willing to give you the Herceptin with no chemo if you choose. I had to hunt around and around until I finally found a guy who offered it the moment I had my consult with him. Perhaps your quest for the the drug lies with another onc.
There was another thread I read around Oct that had another Stage I member that had no chemo with Herceptin that ended-up with mets.

Start another thread titled "Stage I's w/no chemo ??? "
For sure there will be a response more specific to your case. By and large, most Stage I's are node negative and have had small tumors and lumpectomies. At least it will broaden your information base...
I know it's not easy...
Maria

[suzan w]

Hi Jean...yes, my treatment could be considered agressive, invasive lobular carcinoma has a sneaky way of spreading, undetected. Everyone was shocked that it was picked up so early in a mammogram. Among all the screenings I had following surgery, I also requested the Oncotype DX test. This predicts recurrences. It can be a pricey test and some insurance co.s won't pay-I am currently battling my insurance co. to pay for it. Even though my 'prognosis'was good with a small tumor, node neg, etc. The oncotype test showed I was at a "high-intermediate" risk for recurrence. Those results convinced me to do the chemo. I live in the Seattle area, where alot of the Herceptin trials were held. My oncologist is a firm believer in herceptin and feels that if it had such good results for advanced stage breast cancers, then it would be wise to use it for early stage Her2+ cancers. I have very little side effects from the herceptin-runny nose, slight flu-like feeling for 2-3 days after infusion. Had severe joint pain from the Arimidex for the first 3 months (Oct-Jan), doubled up on glucosamine/chondroitin. I exercise regularly which helps. The joint pain has subsided-or maybe I am just getting used to it! Hope this helps!!!

[Jean]

Suzan,
I am impressed with your onc. I live in the New Jersey - outside New York
City only 18 miles - I went to Sloan, Cornell, Mt. Sini and St. Barnabis hospitals
and on the East coast the "gold seal" of treatment is different. You have to have a tumor over 1 cm - to even been considered for chemo - maybe if the grade of the tumor is high (yours was a 3 right?) they would approach it differently. My was a grade 1 (but that does not make me feel) any better or safer. I requested to have the oncotype DX test done and the tumor tissue
I had left was 3MM and of that block I would have used the entire sample to have the test done. My surgeon was agaist the test on two counts.
1) Even if the test came back high he would not agree that chemo or herceptin should be used as a treatment.
2) The test would leave nothing of my tissue block and he was concerned that in the future what we would have of the tumor in the event we needed it.

All the onc. I saw also stated that they would not change my treatment if the Oncotype came back high. It has been very scary and frustrating - since in my opinion it is a best guess scenario. I even sent my information to
John Hopkins to Lille Shockney who is the Director of the Breast Center.
She also stated that they would not have given me herceptin.

My cancer was DCIS invasive. To me all bc are dangerous! I see my onc
on 4/19 and will review my case once again. Do you know of anyone being treated with herceptin who has not had chemo? I am approaching 9 months
out from radiation treatment and I doubt anyone would now consider chemo
treatment.

I too have joint pain from the Arimidex. I also take glucosamine/chondroitin.
I exercise on a regualr basis (yes it helps greatly) I think we get used to the
discomfort. Your contact has helped ever so much.
Suzan thank you for your time and details of your profile. I plan on discussing
with my onc. the different points and I will let you know what comes of it.
I am not sure if the pr status along with the grade of the tumor will
be the cutting point with my dr. My mind and gut keep saying if it
is cancer along with Her2+++ then go for the herceptin.
The cancer was tuff enough I was unprepared for the battle of treatment
and it seems to me that the dr. on the west coast are more willing
to work with newer treatments and not so worried about the "gold seal"
approach. Let's stay in touch!

Wishing you all the best!
Jean

[CLTann]

Jean,


I almost fit your profile:

tumor size: 0.8 cm
ER/Pr positive
HER2 +++
grade 2
mastec Sept 05, node clean. Clean margin.
no radiation, no chemo
onc refused Herceptin alone
On Arimidex only
Ann

[Jean]

Hi Ann,

Thank you for responding to the post. Would you mind sharing why you
had mastectomy - since your tumor was small (8MM).

Did your onc ever recommend chemo? You stated you elected not take chemo, why is that? Because your onc recommended not to? If you could clear that up I would be grateful. I am trying to get some information on
the women who are stage 1 - her2 postive +++ etc. er postive.

I noticed on one of your earlier threads you mention about a dry cough.
I really believe it is the Arimidex - I too have a dry cough ever so often.
Nothing great - more so in the morning when first getting up.
I read that is one of the side effects of the Arimidex / along with joint pain.

Many thanks,
Jean

[CLTann]

Hi Jean,


My onc initially suggested both chemo and Herceptin. My husband and I exhaustively studied our options. Our decision is mostly swayed by our friend, who is a good general practioner. His wife contracted the same profile breast cancer, small size, early detection, no node, etc. They decided that the best way was to do the mastec. Lumptec always has the possibility that there are some small but undetectable cancer cells straying within the same breast. They also felt strongly, as we do, that both chemo and radiation should be avoided if there are no better options. I am sure that you have read in this forum, and in other discussion panels, that many women still got recurrence in spite of all the chemo they have taken. I am a pharmacist and often handle the chemo agents. We are extremely careful to do the doses in well ventilated hood. They are highly toxic and can cause secondary cancers elsewhere in the body. On radiation, we all know that there is a finite limit any person can withstand the cumulative radiation. Some people have lower threshold limit beyond which the body become defenseless to cancers. Even on mammogram, the physical squeezing could cause the loosening of cancer cells to surrounding area by the physical force. My friend working at Sloan Ketterling did not want mammogram and go directly to mastec after learning her cancer from ultrasound and MRI data. When we told my onc that I did not want chemo and radiation, he readily agreed and felt that it was a rational decision. We did compromise to take Arimidex since its side-effects are minimal and its benefit seems to outweigh the harmfulness.

I hope I have explained my reasoning. I now try hard to strengthen my own body so that my system can fight stray or new cancer cells. I use food supplement and exercise, hoping they will do me good.

Ann

[CLTann]

Hi Jean,

Another point I did not expound on in the last message. That is the almost certain cancer cell spread from the sampling procedure during biopsy. In spite of doctors and technicians assurance, the biopsy procedure is itself a very invasive cancer spreading mechanism. We all know that sharing a needle will spread HIV. Nurses are so careful in handling blood sampling. Why then the big tublar instrument for biopsy does not have the same effect? The medical profession does not want to cause an alarm on their biopsy procedure, admittedly useful in identifying and verifying the disease. I am almost positive that after biopsy there are additional sites in the breast that the cancer cells have new grounds to invade. Therefore, I opted for mastec to resolve this potential problem.

Ann

[Petesmom]

Hi Jean,


Stage 1
7mm IDC
node neg
ER+
PR+
HER2+++
Mast (this was a recurrence)
no chemo, no herceptin
Arimidex

Petesmom

[Jean]

Ann,

Thanks again for your response. The doctors I have been seeing are of the same thinking as you. They have said the very same dx regarding the chemo
and or herceptin. I will admit I am very concerned and wanted to be aggressive with the treatment. My surgeon and I did discuss a mastectomy and he did not adivse it since stats were showing that lumpectomy with radiation was as equal to mastectomy. This was a difficult call - and I then went with the lumpectomy and radiation. I spent time with my radiation doctor who explained that treatment today is much different then the rads that were given a few short years ago. I think my comfort level was high with the radiation because my sister when she was a young girl of 21 - had been dx. with Hodgkins and she was given huge amounts of radiation (she was stage IV) the old colbolt treatment at that time (hope I spelled that correctly). She is now 62 years old and has been in remission 41 yrs. (thank the good Lord) and no other health issues for her. So therefore, I was not
terrified of the radiation.

I am learning (the painful and hard way) to accept that this disease is an individual disease for each of us and yet so similiar in other ways. I find the site so informative and the sharing of experiences helps us to cope and learn how to take the best care possible. Have you also discovered that being Stage 1 - that often times you are almost considered to be cured and (not sure how to word this) not taken as seriously as others? When I went to Sloan they dismissed me because I was NOT sick enough. Strange but true,
those were the exact words of the doctor. They were at the time taking
on new paitents that were Stage 11 and better. The original doctor
I was seeing (just before my surgery) was killed in a accicent in the city.
You may have heard of this - she was a well known surgeon at Sloan.
So everything started off quite shakey with my first doctor having a fatal
accident. I am glad to hear that you are doing well and I send all
good blessing that you continue to do so.

I have just recently decided to have the Oncotype DX test done to learn additional information regarding my tumor to support my decision on the chemo/hercpetin issue. Have you ever given any thought to that test?

Thanks again Ann - look forward to keeping in contact.
Esp. regarding the Oncotype DX test - if you have any information
regarding women stage 1 on the fence with chemo/or /herceptin.
I am now learning that there are many who are turning to that test to help assist them in the decision based on the results of that test.

All good wishes,
Jean

[Unregistered]

Sounds like a lot of stage 1 her2+ got chemo and hercepitn here from the responses in general. I figure that there are pros and cons to either side of the coin whether you are treated agressively or not. It is a tough choice that requires a lot of thought and consideration. In the end, only you can decide what is the best choice and one that you can live with without regrets.

[Alice]

I'm not in the catagory that you all are in but I was just wondering what you are refering to when you say oncotype dx test?

What does it check for and how does it help to predict recurance?
thanks , Alice

[karenann]

Hi Alice,

The Oncotype DX is a test that looks at your tumor (the genes, I think?) and determines if you are in the low, medium or high risk group for your cancer to recur. A lot of women use this test to determine if they will do chemo or not.

Hope this helps.

Karen

[Jean]

Oncotype DX is a Genetic test which can help predict which women most likely to have local or regional recurrence. Researchers from the National Surgical Adjuvant Bereast and Bowel Project and Genomic Health, a company based in Northern California have presented data about their Oncotype DX test at the San Antonio Symposium.

Last year, the group reported that the Oncotype DX test not only could predict which women with node-negative, estrogen receptor positive breast cancer were most likely to have a distant recurrence but which women would benefit most from having chemotherapy. Onc currently use a woman's age, tumor size, tumor grade, and estrogen receptor status to assess her risk for having cancer recur. But it is still a best guess scenario. There's no perfect way of determing which women will have their tumors recur and thus who will benefit from chemo and who doesn't really need it. As a result, many women receive chemo who probably don't need it, while others who could benefit don't get it.

The Oncotype DX is another step in the direction of treating women with bc on a individualized basis. The Oncotype test provides increased information
about which women are more likely to benefit from chemo.

Only women whose tumors are node negative and ER positive can use the test.


Jean

[Alice]

Thank you Jean for your response to my question. The er status lets me out of this catagory but it didn't answer the question of what they are testing for?
Genetics is a wide and varied subject. Do you or anyone else have a web site I can go to to look into this in more specifics? I have a friend who fits into this catagory and I would like to get her as much info as I can.
Thanks a lot, Alice

[karenann]

Alice,

If you go to google and type in Oncotype DX there is a ton of information and it explains all about the test. Also, your friends doctor should know about it and would be able to tell your friend if she would benefit from the test.

Hope this helps.

Karen

[Alice]

Karen,

Thanks for the info. That is a good site. It didn't explain what genes they are testing for but I think that would be too confusing except for a pathologist to read. It did give a lot of usefull info. In looking at it I think it must be testing for genes that are affected by tamoxifen. Sometimes I think it would be nice to know the likelyhood of recurance and on the other hand I really don't want to know.
Thanks, Alice

[kat in the delta]

Hi all
HER2+++(ICH&FISH)
Node--+
Stage II
Grade III(my tumor was over 4.8cm)
EST--+(but, weakly so "?")
PR-- neg.
4 adriamy/cytoxins--12 Taxols,12 HERCeptins
Partial radical masectomy before chemo,1YR AGO
1st time cancer, my surgery's anniversary is today!

Now, I'm in my 3rd month of a yr. of Herceptin. What about me taking something for the estrogen receptor being "positive". Who Knows About This??? I see someone taking Herceptin and Tamoxifen( ?) RSVP
Also, do any of you still feel like you are "a Patient" like I do because Herceptin is IV ?? RSVP

[hkorel1]

my path report said infiltrating ductal carcinoma
estrogen and progresterone positive
c-erb-B2 positive 2+ confirmation by FISH pending
stage 1 no nodes

now my onc says I am not her 2 positive as FISH said negative
should I worry about recurrance

thanks

[kat in the delta]

HKoral1:
Since your FISH was negative , you do not have the most aggressive kind of breast cancer , and of latest that "I've" heard, you do not need Herceptin. My Onc. and my sister's Onc. say that Herceptin just gives you a 10% more chance of the cancer not reoccuring only if you are HER2 positive, and it would not help you if your FISH was negative. The FISH is the best way of determining the status of HER2, by the way. Which is GOOD news for you, as yours is not as aggressive; so, you have even better odds of the cancer not coming back. My sister's FISH was negative, also, and she has been cancer free for 6 yrs!! Don't worry, you are O.K.-Get sleep, eat right and exercise----- kat in the delta

[hkorel1]

Thank you so much for your message
I am so glad to hear that your sister has done so well

she is in my thoughts and prayers

take care

[Valerie]

Hi all,

I am er +
pr indeterminate
node negative
.4 cm tumor
I had a lumpectomy and 4 A/C followed by radiation. One year and 3 months after the end of chemo, I started on herceptin every three weeks for a year. I am also on Femara. So far so good with the herceptin. I also had the oncotype dx test which indicated that I had a high risk for recurrence. That is why I opted for the A/C. and once I saw the statistics on the herceptin I decided to go for that too. Now sometimes I wonder if I should have done one of the taxols too. You always hope you do enough to prevent a recurrence.