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

[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).

[TiffanyS]

Thanks Tricia. I should know by mid November if the Perjeta is working and will keep you posted. I hope it does! I am glad to hear that you have been NED for 11.5 years Karen. I hope you stay that way!

[karen z]

Me too (!) but I try and take it one day at a time and hope for the best.

[TiffanyS]

I went to the hospital today for my second Perjeta treatment, and I got the results of my CEA blood test, which was normal (my results were 2.7). My doctor told me that the fact that my CEA level is normal could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. My next CEA test will be in November, and we will know more once we get those numbers back. Given that the CEA blood test is not accurate for everyone though, I told my doctor that I didn't think it was a reliable way to determine if the new medication is working, and she agreed. She's going to send me for another CT scan on November 22. So, I don’t know for sure yet if the Perjeta is working, but I hope to know more after my CT scan. If it is working, I’ll only have to take eight doses of Taxol, instead of 16, which means I’ll be done with chemo by mid-December. My doctor also advised me that she's going to arrange for me to get genetic tests done (I have already done the BRCA test and am expecting the results on November 22). If any of the test results come back positive, I may qualify for some experimental drugs. She's going to try and pull some strings and get me this appointment as soon as possible, but it may be months before I get an appointment. I asked my doctor how long the Perjeta works for most people, and they told me that they have one women who’s been taking it for five years and is still stable, however, most of the women who took it during the Cleopatra trial remained stable for two years. I hope it works for five years for me, but, at this point, I will talk whatever time I can get. At least I have the T-DM1 as a back-up if the Perjeta doesn’t work!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Waiting for brain MRI to confirm that cancer has not spread to brain!
10/16 – Get results of CEA blood test, and it is normal (my results were 2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me!

[Carol Ann]

That's progress ... praying that the scan will show you are indeed stable!

Carol Ann

[TiffanyS]

Thanks Carol Ann! I’m hoping the scan shows that I am stable too! I wish I were getting it sooner than November 2 though. The waiting is the hardest part!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Waiting for brain MRI to confirm that cancer has not spread to brain!
10/16 – Get results of CEA blood test, and it is normal (my results were 2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me!

[Carol Ann]

It IS hard to wait!! ARRRGH

Please know that we are with you!!

Carol Ann