Do I belong in this forum?

Kitchenella

Hi,  I just got my Path. info from my surgeon.  I see an oncologist on the 18th of Dec.  I'm not sure what all this means.  All the surgeon told me was that my original biopsy of HER2 - was wrong and the final is +. Can someone interpret this mumbo jumbo for me?  

Diagnosis:  S/P Malignant Neoplasm of Female Breast, grade 3 IDC T1c ( 1/8 cm.) N1/30 E3+ (90%) P2+ (60%) Ki67 30% Her2 3+  ( understand the grade 3 but not the N or the P or the Ki67) 

Thanks, Peggy 

PS. Margins were clear and only one node was involved.  My surgeon is agressive and took them all out.   How long does it take to get range of motion back in my arm?  I'm doing my exercises duitifully but seem to have reached a plateau this week. 

Momine

Hi there and welcome (although I am a newcomer as well), I am across the sea from you in Athens, by the way, which is why I am here at this hour.

I had a double mastectomy, with axillary node removal on one side 3 months ago. My shoulder is fine, in terms of mobility, but I still have some pain in the armpit etc, and it is a bit of a challenge to learn to watch out for all the things I am no longer allowed to do. The recovery, as far as I can tell takes quite some time, but the exercises DO help. 

I would also urge you to find a physical therapist who specializes in BC patients and who knows about lymphedema prevention and management. This is an area where being proactive is a good idea.

I may actually go to to Tel Aviv in a few months to consult with the breast cancer center there about follow-up care. 

Moderators

Kitchenella, welcome to BCO. To help understand all the detail of your pathology report, the Your Diagnosis section of the main Breastcancer.org site will walk you through each line of the report, explaining what it means. You'll also see links from that page with Questions to Ask Your Doctor, a mobile app to help track your results, and a Pathology Report Checklist.

Judith and the Mods

nurseronda10

I can be of some help.  Looks like  you are what is called triple positive.  P is progesterone. Not sure why the 2+ is beside it.  Not familiar with the Ki67.  Tumors are staged for prognostic outcomes using this method, such as T1 meaning tumor is 2.0 cm or less in size, N1 means tumor has spread to lymph node or nodes. Others will chime in with more info.  

I had to go to physical therapy for several weeks after my mastectomy and lymph node dissection to regain range of motion.  I developed cording that went all the way to my wrist.  Still have visible cord in armpit area.  Also developed lymphedema which took months to get under control.  Just had to find the right lymphedema therapist (third one was a charm).  

Best of luck to you.  Glad you found BCO....wealth of info and lots of women with helpful hints from A-Z 

Momine

Nurseronda, may I ask you what "control" means with the lymphedema? Do you have to wear a sleeve daily? Can you do things like cook with the affected arm?

Sassa

Kitchenella,

In your case, the N 1/30 means that one node out of the 30 removed was positive for cancer in the node.

The KI-67 is a test done to determine how many of the cancer cells may be dividing at one time.  30% is considered aggressive (relax, my KI67 was 70%).

Chemotherapy is most effective on cells that are dividing at the time of the chemo administration.  So for us with the "aggressive (fast growing ) cells, chemotherapy is very effective.

dragonfly1

Kitchenella I'm so sorry that you find yourself here but there are lots of us dealing with this and doing well. Her2+ BC is aggressive and the treatment is therefore aggressive to improve your prognosis and reduce the recurrence rate. I'm a triple positive as well and the treatment plan for me following a lumpectomy with clean margins was: chemo x 6 + Herceptin for one year followed by Radiation and then 5 years of hormone-blocking medication (Tamoxifen for me because I'm premenopausal).

By the way, there is another thread that is very active called "Triple Positive" where you can get a lot of support and information.

Most importantly, please know that Herceptin has completely changed our prognosis. Herceptin has given us tremendous hope of beating this type of BC. Going through all of this treatment is not easy and it's a busy year to be sure but it's very doable. I worked full-time through it all and I'm feeling much better now. Wishing you all the best! Please ask any questions you have and we will all help in any way we can.

dlb823

Your original Her2 assessment was probably borderline negative, and your doctors absolutely did the right thing in sending out for a more sensitive Her2 test, referred to as FISH.  Getting your Her2 status correct determines the need for Herceptin, a wonder drug, you which will no doubt now be included in your chemo regimen.

Ki67 is a protein associated with cell proliferation.  At one time (pre-Oncotype-DX testing), it was one of the only markers they had to help predict a woman's risk of recurrence.  The higher the Ki67, the higher the risk of recurrence, or so it was believed, so the more aggressive the treatment (tx).  Today, however, oncologists look at many more individual genetic markers to determine our necessary therapy.   The much more sophisticated Oncotype-DX uses something like 20+ markers, so there's not so much emphasis put on the Ki67 factor alone.    (((Hugs)))   Deanna

Kitchenella

Thank you everyone for your help.  I'll let you know what my oncologist says on Sunday.

Dragonfly when you say Cemo+6 does that mean 6 months of Cemo?  Also Herceptin for 1 year.  Does that year start after the 6 months of Cemo.  I read that Herceptin is administered once a week  through a port.  Is that so?  That would rule out any lengthy travel plans?  I guess my onco will answer my questions.  

Thanks again everyone.

Peggy 

suzieq60

Kitchenella - It depends on the treamtent you are given. With 1 positive node they may give you AC-TH (a chemo protocol) - I'm not sure of the frequency of those treatments. I had TCH which is usually given to node negative patients. That protocol is 6 lots of TCH (taxotere, carboplatin and herceptin) given every 3 weeks and then 12 more herceptin on it's own for the remainder of the year. Some ladies get herceptin weekly during the chemo phase, some have it 3 weekly like I did. Good luck for your oncologist visit - they will explain it more thoroughly.

Sue

dragonfly1

Kitchenella Your oncologist will explain your specific chemo (as Susieq58 said it can vary a little bit) but in general it is 6 cycles which are 3 weeks each for a total of 18 weeks. The Herceptin year begins at the same time as chemo. My oncologist gave the Herceptin every week during chemo at a lower dose (18 weekly doses) and then went to every 3 weeks (higher dose) afterwards for the remainder of the year. Some doctors will give the Herceptin every 3 weeks during chemo but either way you will end up with the same overall amount for the year.

As far as travel plans, don't rule things out completely. I don't think I could have traveled much during chemo because I didn't feel very good at times (and I had the weekly Herceptin infusion). Radiation was 5 days per week x 6 1/2 weeks so I couldn't have traveled then either. But as soon as I finished chemo and Rads and was only receiving Herceptin every 3 weeks I went back to my normal plans. I traveled to England and Paris for 2 weeks in between my 3 week Herceptin infusions. After chemo/Rads, life will settle down and you will have a lot more freedom:)

The port is wonderful and many of us have chosen to have one because there are so many infusions with chemo/Herceptin. I've never had any trouble with mine and I felt that it was important so that my veins in my arm would not be compromised by the toxic chemo.

Hang in there and keep asking any questions you have...

Kitchenella

Thanks Dragonfly.  We already have canceled our February bi yearly trip to the USA to visit our kids but next December we have our second grandson being Bar Mitzvah and I sure don't want to miss that.  G-d willing it will work out.

Peggy 

dragonfly1

Kitchenella That certainly sounds reasonable-you should be feeling pretty good by next December. My trip to Europe from the USA was only 4 months after chemo ended and 6 weeks after Rads ended and I was fine-just a bit fatigued. With that much time you should be able to really enjoy your trip:) The other thing that really helped me was having something to look forward to so it's great that you have the trip planned-keep that as a goal.

bluedasher

Kitchenella, being on Herceptin usually doesn't affect your ability to travel (except of course being home at least once every 3 weeks to get the Herceptin). I had almost no side effects from Herceptin alone (which is pretty common).

I had 6 cycles of TCH (18 weeks) with the Herceptin continued every 3 weeks until I'd had it for a year. I usually travel on business at least once a month. During chemo, I went on three business trips - each during the third week of the chemo cycle. My usual pattern was to feel really tired from about day 2 to day 5 after the chemo was administered and then ramp up so I was close to normal on the third week of the cycle (though the down time stretched in cycles 5 and 6). 

The only extended time when I couldn't travel at all was when they were doing radiation treatment because it was 5 days a week for 6 weeks. 

Toward the end of my Herceptin only time, I needed to go on a 2 week trip and my once every 3 week Herceptin would have fallen in the middle of it. My onc adjusted the dosage 2 weeks before the trip to a 2 week dose instead of 3 so I could get the next Herceptin just before the trip.

Kitchenella

It's me again.  Just reporting on my oncologist appointment.  It went about as I suspected.  I'll be having bi weekly treatments.  The treatment plan is written in Hebrew, which I don't understand well, but I think the initial drugs used will be Doxorubicin - Cyclophosphamide.  Administered bi weekly for 8 weeks.  Then will start 12 weekly treatments with paclitaxel and herceptin.  After that just the herceptin for a year followed by radiation. Also Tamoxifen for 5? years.  The therapy is called Dose Dense.  I have to get an echo cardiogram and meet with the oncology nurse before I start treatment.  I hope to make my first treatment for January 5th. (Happy New Year!).  

He also said I could get a treatment of Herceptin in the USA if I have to be there for more than 3 weeks.  I wonder how much one treatment, out of pocket, would cost.  We don't have insurance in the USA.  I'll have to check and see if our insurance here would at least reimburse us the amount they would save by me not having the treatment here.  Oh well I'll worry about that when the time gets closer.

Thanx again for your support.

Peggy 

Kitchenella

P.S

The oncologist (who I like very much BTW) also gave me some information about a clinical trial.  It is a Randomized, Double-Blind, Placebo-Controlled, Multi-Center Phase 3 Study of Denosumab as Adjuvant Treatment for Women with Early-Stage Breast Cancer at High Risk of Recurrence. I havn't even read the literature in depth yet but I'm sort of leaning against participating.

Peggy 

Leah_S

Peggy, I'm not sure if I can help you with the Hebrew (yeah, I'm here 29 years and my reading is still first-second grade level!) but if you call me I can try. I sent you my phone # in a PM (private message). On the top of the page you'll see where it says Private Messages with a number to tell you how many you've  received. Click on that to go to your messages.

Where are you having treatment? I'm at Sha'arei Tzedek and extremely pleased with it.

Best of luck. Let me know if I can help in any way.

Leah

Momine

Leah, may I ask you if you know anything about Dr. Moshe Papa at the Meirav Breast Cancer Center in Tel Aviv?

I ask because this doctor was recommended to us. 

Leah_S

Momine, sorry I haven't heard anthing about him.

Best of luck.

Leah

Momine

OK, thanks Leah.

Kitchenella

Leah I'm having treatment at Sha'ari Tzedek.  So far it has been fine.  I get my echo on Jan. 1st (happy New Year).  Meet with the nurse on the 3rd. and start my treatments on the 5th.  I'm actually anxious to get started so I can see how they affect me and can make some decisions as to how much help I might need in regards to household chores.  My husband has been a champ but he is a disaster on the domestic front.  THe week after my surgery he did laundry for the first time in years.  LOL.  

Peggy

PS thank you everyone for your help