TRIPLE POSITIVE GROUP

I hope to find that out today when I meet with MO. My BS said my MRI shows the cancer as larger than the ultrasound too. I will ask about that today. I am hoping that since the ultrasound shows the lump at 7mm, chemo is not prescribed. With the bilateral and implants, does that mean no more mammos? Thank you for responding Natty.

Hi Bird,

I think once treatment is over I will do MRI's and no more mammos for follow-up. I would think though that with HER+ that you will probably do some kind of chemo. In my case, the plan is that if my tumor is unchanged at surgery and I stay Stage 1 it will be Taxol for 3 months and Herceptin for a full year, if I'm Stage 2 it will be TCHP for 5 months and continue the H and P for the full year. After that, Tamoxifen for whatever they determine, 5 or 10 years. I'm pre-menopausal. Good luck at your appointment today - ask a lot of questions... it's your time:) Let us know how it goes

Bird-of-light you may want to read what Beesie has posted regarding making the MX vs BMX choice. It's the 6th post on this page: https://community.breastcancer.org/forum/96/topics...

Eye issue. I am scheduled for cataract surgery the end of May and mid-June. Mine were referred to as "blossoming" from the steroids during chemo. I am actually looking forward to these surgeries. My vision is progressing to the almost blind.

Lago, good post. Thank you. Definitely some questions I need to ask myself and the MO. Was hoping the bilateral would get me out of rads. But, the cancer is close to the chest wall, so who knows.

Bird-of-light my tumor was also in the posterior region right above my heart. Tumor was large and breast small so I didn't have the choice, no lumpectomy for me. I was in a gray area for rads. Usually tumors over 5cm do get rads. My rad oncologist gave me a pass. I think she felt the damage to my lungs and heart wasn't worth the reward in my case. I am also very small framed.

I need to ask my MO about radiation. If I can get out of that and mammos forever, it seems reasonable. I am 5" 7" with a b cup now.

So, most recent update (and some layperson research notes of interest) is as follows:

1. I am having a PET scan (to recheck the liver spots) on Monday. The head of nuclear med. told the doctor that the size from the CT is borderline as to whether or not they are large enough to be picked up by PET, even if mets, but he felt it worthwhile to do. I am comfortable with this result. I hope the liver spots are nothing, but I am glad we are checking before the final chemo plan is decided. Right now, it is still Taxol and Herceptin, once a week for 12 weeks, then Herceptin plus AI for 9 months, then continue with AI.

2. I learned my tumor is actually 1.9 cm, which puts me just below the "cutoff" for use of Perjeta with Herceptin, per my medical groups' general practice. I haven't learned yet from Genentech more about Perjeta, efficacy etc. but hope to early this week.

3. I am getting a second opinion re treatment plan from a breast cancer oncologist at Stanford who works closely with a cancer group there that is involved in cancer detection via blood and otherwise and is well aware of the "floating cancer cell" issues, even with small tumors, etc. I am able to get this done before my treatment is set to start April 29--I got it extended out a few days.

4. My doctors and the Stanford folks, with whom I've already spoken with informally, sent my record to, etc, have indicated that for those in my situation--no chemo or Herception pre-surgery, one should start chemo and treatment no more than 60 days post-surgery...so that is why we start this week-it's the earliest I can start post-BMX (42 days post-surgery.)

5. My MO actually looked at the study of my FGFR4 mutation (that allows extra STAT3 growth factor into cancer cells through a heretofore unknown "secret" back door), of 372 HER+ patients, and found that only 5 of them fit my profile: node negative, no neo-adjuvant therapy, and Triple Positive. Though the research seemed very interesting and clearly will result in drugs that will help many cancer patients some day, it's extremely early days and will be quite a while before this translates into drugs and clinical application. Of note is that curcimin, (from the spice turmeric) effectively does block STAT3, but it is hard to absorb through ingestion. I do take a high quality and large dose supplement of it already, however, and will check to see if that can continue through chemo, but will certainly go back to that once chemo is done. Some kinase inhibitor drugs also work in similar ways, such as Tykerb (lapatinib), but are used now , I believe, only for metastatic bc.

6. Super interesting research released just last month shows that in a controlled study,Tykerb plus Herceptin given for 11 days in pre-surgery neo-adjuvant context completely eliminated patients' tumors for both node positive and negative patients. For anyone interested: https://www.sciencedaily.com/releases/2016/03/160310125513.htm .

7. Haven't actually made contact with Genentech folks yet, but am speaking to someone today about how to approach this or whether I should do so at this time or wait until I hear what the second opinion MO says. I am able to contact the Genentech folks at any time, so I don't feel a rush on that. I also want to wait until I have the results of the PET scan.

Well, that's the update for now. My college age daughter surprised me with a visit home for the weekend, which has been fabulous. She helped me pick out some good hats and scarves and a tentative wig (will fit after I"m a hairless wonder, but it is on hold for me (we have a fantastic "all breast cancer" boutique nearby, so it is a very painless process.) Hope everyone is has a good weekend.

Elaine - I had noticed the taxol+ Herceptin combo on other posts and wondered why I was not offered that option. The MO is patient and nice. I think I could ask about that. He doesn't know exact size. Ultrasound was 7mm, biopsy core was 9mm, MRI showed larger. He estimated 1 cm. He also ordered a PET scan for next week. So far, we are not suspicious of node involvement based on ultrasound and MRI. It is awesome that you had little SE.

Suzieq60--- Hello and congrats on 7 years

ovaries act up on me occassionally, not on lupron! But the still are there and I sometimes feel they act up. Age 65. Had hysterectomy, but still have ovaries, both have minor cysts on them

fluff - my MO ordered a BCI (Breast Cancer Index) test to help determine what to do at the five year point, which is in June. This test has a two-pronged result - it uses the original tumor and calculates a score for recurrence risk, and one for drug benefit. According to the test data, less than 6% of patients derive benefit from continuing endocrine therapy beyond 5 years. I fall into the unfortunate result category of high recurrence risk and low drug benefit. I have an appt on Thurs to see my MO and we will discuss, but not sure what the plan will be. Low benefit is not the same as no benefit so he may suggest I stay on. I have mixed feelings, as much as I would like to come off (just developed a new trigger on left thumb and right ankle) I worry about being on nothing even though both times I switched I took a two week drug holiday and noticed I felt better off both drugs. I have had both cholesterol and bone impact, bad enough for Prolia, so there is the question of cost/benefit analysis. Since this test was done on my original tumor I am questioning whether Femara/Arimidex ever worked, have I just been lucky, or what?

FluffQueen0: what supplements did you take that helped with Taxol?

Arlene - as long as your tumor is stored I think they can access it. BCI has a requisition/order type form and whoever possesses the sample sends it along. Mine is in the local area (I think, lol!) but was stored in the pathology department of the hospital, which is independent of my MOs practice. I asked about changing from AI drugs to Tamoxifen - offered to do it - before the BCI test. My MO scrunched up his nose about it, don't think he favors it - in some measure due to the metabolizing issues, and also because I believe there is some thought about the lack of effectiveness for Her2+ patients.

slapp - the key for most of us is the targeted therapies, and they are given with chemo for the most part. For smaller, node negative, tumors many have Taxol and Herceptin for the Her2+ aspect - this is proving to be very effective, I can link some studies if you would like. Herceptin is not chemo, and most don't have chemo-like side effects from it as they continue it for the balance of the year. The five-year med is to control estrogen - either Tamoxifen is you are premenopausal, usually one of the three AI drugs if you are post-meno, or wish to suppress ovaries either surgically or with another method. There are a number of us who are far enough out to have perspective on whether or not doing all of this was a good idea, and if we would do it again - not to speak for all, but I don't see regrets on this thread much. The proposed treatment for you is standard of care, Her2+ cancer, even if small, is nothing to be messed with, IMHO. I am sure others on this thread will chime in with their perspective, but we are here to support you with whatever choices you make. There is a lot to take in and it can be a bit overwhelming - if you have questions - please ask them!

Slapp, I have stage 1 grade 3 IDC. I had only 1.5mm of IDC. Her2+. I did chemo, because I wanted the protection of herceptin, and chemo came with it. I'm 41 with two small kids, so I threw the book at it. As Specialk says, Her2 is nothing to mess with. I agree, IMHO.

We are here to support you every step of the way!