Triple positive-Always a recurrance?

[tricia keegan]

Hi Everyone I was dx last June with Idc 3/9 nodes positive and only now trying to get my ahead around the whole her2 thing and understand it.I have had a/c x4 them weekly Taxol/Herceptin x12 and just completing 35 rad treatments this week.You all seem so knowledgable on this board I just wanted to ask what is probably a very silly question but hope you will bear with me.As I learn about my situation it seems triple pos is bad news although I know the herceptin may help.I gather it does'nt work for everyone so well and just want to ask if being triple pos means there will always be a recurrance or is it possible to not have this come back at all? I am stage 2. Are there any survivors out there that are triple pos and hav'nt had a recurrance?Maybe I'm just reading the wrong material but it all seems fairly bleak.I 'm a strong believer in knowledge being power even if it is'nt what I want to hear I would rather know what I'm dealing with.Thank you all for your great advice and posts that have helped me so much.Especially the people who are already stage iv and have taught me in my ignorance that even this is not a death sentence.
Tricia

[Bev]

Hi Tricia,

I have the same diagnosis. My opinion is that without treatment, triple positive tumors may be more aggressive. With tamoxifen, AI's and herceptin, our stats are better than negs. I'm looking forward to reading replies from the more knowlegeable members. Good luck, BB

[Shawn]

Hi,

I was told by my aunt who is an oncologist in Boston, that the worst kind of breast cancer is when it is ER- PR- and Her2/neu-. Basically because there is not treatment for it. The second worst is ER- PR- and HER2/neu+. Anything positive ER PR was better because they had more choices for treatment. Her2/neu is aggressive alone because it is fed by protein.

Like I said this is just what she told me when I was diagnosed last August. Hope this helps.

Shawn

[Becky]

Being hormone positive is always a very, very good prognostic factor even if you are also Her2+. As far as best to worst, just being hormone positive (but Her2 neg) is best (especially if you are strongly ER/PR positive). Then ER/PR pos and Her 2 pos is next followed by ER/PR neg but Her2 pos. Triple negative is worst (as there is no additional treatments after chemo and rads). This was covered at a post session at the Cure Conference in San Diego. It is also well documented overall.


Best regards

Becky

[sassy]

Hey Tricia,

I also had same dx and treatment. Triple positive has more treatment options than negative bc's. Has your onc discussed taking and aromatace inhibitor now that you are finished with rads? Being her2+, AI's work better than tamoxifen, but should only be used if you are post=menopausal. I have taken Lupron shots to keep me menopausal and started arimidex immediately after rads.

Treatment with herceptin has significantly changed the prognosis for early stage her2+ and seems you are on track with aggressive treatment.

Sassy
________
HelenH

[tricia keegan]

Thank you all for the advice and replies.Sassy I will be taking Arimidex after I have my ovaries removed in july.I made this decision to cut my chance of recurrance even more.Until then I will be on Tamoxifen when I finish rads next week.For some reason my onc will only give Lupron shots to women who have a large number of nodes affected or have ovarian cancer in the family.Thank you to everyone again and good health to us all.
Tricia

[sassy]

Tricia,

You may want to read the following thread about triple positive. Its pretty informative.

Sassy
http://her2support.org/vbulletin/sho...t=side+effects
________
Milf Live

[Lani]

but I believe the answer is "they just don't know" Until fifteen months or so ago most articles stated that only 10% of her2neu+ breast cancers were ER+
Now most articles quote something around 45%.

In truth, until recently many countries and many hospitals within the US did not test her2 or did not test it well. I posted an article on how even ER and PR are not that well tested!

The good news is that in the HERA and No. American Herceptin adjuvant trials it appears on the initial reports that hormonally positive her2s (tested well because that was a requirement for an institution participating in the trial) did as well as hormonally negatives ie, their risk of recurrence in the period of the trial was halved by adding herceptin to chemo. I believe different antihormonal agents were used between US and Europe and even within Europe.

Noone knows the best antihormonal and whether they need to be given with herceptin to be effective or are effective after herceptin on their own.
(Sorry to throw this in, but they do not know yet)

The good news is we had some multiyear survivors with Stage IV on this site who were hormone positive (not the most scientific result, just anecdotal, but good to know)

As far as I know there are no breast cancers that always recur. Even triple negatives do not always. They are generally considered those with the worst prognosis. From what I read her2s were, before herceptin, the next worst, but they did not separate them by ER+ and ER-.

An abstract from a conference almost a year ago may hold the key to this, but as far as I can determine it was never published in full:

Oral Presentation

Molecular distinctions among ERBB2-overexpressing breast cancers
SS Jeffrey
Stanford University, Stanford, California, USA

from The Third International Symposium on the Molecular Biology of Breast Cancer
Molde, Norway. 22–26 June 2005

Breast Cancer Research 2005, 7(Suppl 2):S.22 doi:10.1186/bcr1065

Published

17 June 2005




HER2 or c-ERBB2/neu is a member of the epidermal growth factor receptor (EGFR) family and encodes a tyrosine kinase receptor. Overexpression of HER2 protein is generally attributable to gene amplification. HER2 is overexpressed in 20–30% of primary invasive breast carcinomas and in a greater proportion of in situ breast cancers. Invasive breast cancers that overexpress HER2 are generally higher stage, show lymph node positivity, and have higher S-phase. Moreover, they are often associated with poor prognosis, particularly in node-positive patients.

Microarray studies have subdivided breast cancers into several subtypes. HER2-overexpressing ER-negative tumors are generally classified within a single subtype denoted ERBB2-overexpressing. However, ER-positive HER2-overexpressing tumors are usually intermixed with other ER-positive tumors that do not show HER2 overexpression.

Our recent population-based study evaluating HER2 overexpression and hormone receptor status has unexpectedly found that the majority of HER2-overexpressing tumors are hormone receptor-positive and are more common than HER2-overexpressing ER-negative breast cancers. This implies that the ERBB2-overexpressing molecular subtype, which is associated with ER-negative status, only includes a minority of HER2-overexpressing tumors. We therefore studied gene expression patterns of HER2-overexpressing breast cancers and found several tumor subtypes with distinctive molecular signatures. These ERBB2-overexpressing subtypes spanned the range of hormone receptor status and highlighted different biological characteristics. Since the clinical course varies among patients with HER2-positive tumors, as does their response to targeted therapy, differences in global gene expression among HER2-overexpressing tumors could be important in distinguishing patients for the design and delivery of individualized targeted therapies.

Am sure many on this board would be interested in the full text of this!

Lani

[BEVIE]

Hi Tricia,
I am triple positive dx 5 1/2 yrs ago node neg. 4 AC's 28 rads. 9 months of Tamoxifen and 4yrs. of Arimidex as far as I know still recurrence free.

[AlaskaAngel]

Triple positive here too... dx T1c late 2001, no dose dense, no taxane, no herceptin, NED...

Best to you, Tricia

[tricia keegan]

Thank you all Ladies and also to Lani for that info.It seems so overwhelming when you first begin to research all this but from these posts I certainly will stay with a positive attitude as much as possible and hope for the best.I think I wanted the impossible.A Dr to tell me this will never come back which is unrealistic I know and what we all would love to hear.I'm slowly learning there are no guarantees with bc and we just have to find a new "Normal" life and stay dilligent.Thank you all so much again for taking the time to reply and giving me hope
Tricia

[tricia keegan]

Sassy thank you also for the link.Will check it out!

Tricia

[Tankweti]

Triple positive. Dx 8/12/14. Lumpectomy 10/15/14. Stage I, no nodes. MD only wanted to prescribe RT and Tamoxifen without Herceptin. I thought "are you nuts?" To this day I dont know what his rationale was. But I took 2 months to do alot of reading and decision making. I am an RN and was working in a pathology office when I was diagnosed. He wouldn't change his mind so I went to Sloan for a 2nd opinion. I wanted the least toxic regimen I could get and had settled on Taxol plus Herceptin without Tamoxifen. Tamoxifen is a known carcinogen in its own right per W.H.O. and also has very active crosstalk with HER2 protein - which can either cause resistance to Tamoxifen OR can make the cancer put its foot on the gas so to speak. Most docs give patients cookie cutter medicine, which is obviously not going to be appropriate for everyone. Anyhow Sloan recommended the Taxol + Herceptin, put it in writing for him and he caved in when I brought him the letter. I had 12 weeks of Taxol + Herceptin, followed by a year of Herceptin alone. So far no recurrence. They say the first 4 years with HER2 is the most critical. It seems to lose its punch after then. In older women Iike myself, age 64, the estrogen receptor positivity will be the next big issue and tends to recur 5 years or more after diagnosis. But so far so good. Forgot to mention also.had RT x 36 treatments as I had a spot of DIC that was 0.6 mm from ribcage. It technically had clear margns but they don't usually like to see margins any closer than 2 mm.

[AlaskaAngel]

Hi Tankweti,

The cross-talk was the problem I too could see with taking tamoxifen, but back when I was going through tx 14 years ago, everyone seemed deaf about it. I finally just dumped out of continuing to take tamoxifen, on my own... first cutting back to half-dose for about 3/4 of a year before dropping it. I had taken full-dose for a year before that. At the time, I noticed that within 3 months after starting tamoxifen, my mammograms had gone from showing very dense breasts to showing no density at all, and I raised that question with providers but they didn't see any relevance to that. Later on, when I saw the work that was done by the Karolinska Institute that related breast density changes to tamoxifen usage, I realized that their investigation results would probably apply to me. (Check it out online, tamoxifen and Karolinska Institute). So my guess is that I was one of those for whom tamoxifen was best-suited.... if they had understood the mammogram density loss results, and if it had been taken only short-term like I took it, to minimize any further risk due to tamoxifen cross-talk.

I did no taxane, no Herceptin, and no AI and remain without recurrence thus far, although like you, as a HR+ late recurrence is a possibility for us both. (At the time I was treated, neither Herceptin nor AI's were available to me other than by clinical trial, or I would have accepted Herceptin.) What is especially ironic is that as a HR+ I probably would actually have saved myself a lot of misery and would have gotten more bang for the buck out of skipping chemo and doing the Herceptin and hormone therapy.

AlaskaAngel

[tricia keegan]

Just an after note to say for newer members that I'm still alive and kicking with NED eleven years later but back on Arimidex as newer studies have found more benefit to continue.

[TiffanyS]

Hello Tricia, as a new person on this board, it’s good to hear that you have been NED for eleven years. I just started Perjeta a few weeks ago, as I had a local reccurrence, and it would appear that my cancer has spread to my lungs, and they told me that if it works, I will be taking Perjeta, along with Herceptin, for the rest of my life. My doctor speaks very highly of Perjeta, and has advised that they have another patient who has been taking it for almost 5 years and is in remission, and we are hoping it will put me in remission too, but we don’t know how long it will work. It could put me in remission for 1 year, 2 years or 10 years. Right now, I’ll take whatever time I can get, and hopefully they will come up with a new drug in the next few years. They are doing a lot of research in regard to immunotherapy, which I think is the future of cancer treatment. My doctor advised that there is already an immunotherapy drug for HER2 negative breast cancer, but, unfortunately, there is not one for HER2 positive breast cancer yet.

[tricia keegan]

Hi Tiffany and thank you, I'm so sorry for what you're going through but there are many members here who have had great success with Perjeta and were even in the early trials and I hope you will too. I also agree with you on immunotherapy being the future of cancer treatments and even in the eleven years since my own dx things have improved and moved on so much. Sending good wishes for a great response for you and stay strong, one day at a time.xx

[TiffanyS]

Thank you Tricia. I’m glad to hear that many members of this board have had success with Perjeta. I hope I have success with the drug as well! I meet with my family doctor last night in regard to an unrelated issue, and we started talking about immunotherapy, and he agreed that it’s the future of cancer treatment. I just hope they are able to come up with an immunotherapy drug for people with HER2 Positive breast cancer soon.

[tricia keegan]

Please keep us posted on how you get on with the Perjeta Tiffany, wishing you lots of luck with it!

[karen z]

One can never know (and I am well aware of that) but I am triple positive and coming upon 11.5 years of no evidence of disease (knocking on wood).