TRIPLE POSITIVE GROUP

mannettes Welcome to Cancer University. In the beginning most of us knew nothing unless we had a family history (I did not). Scary until you understood more. I'll try to break it down so not to overwhelm you. 

1. They will base your treatment on your final pathology if you do surgery first (I did surgery first).

2. My Breast Surgeon (BS) thought for sure I would have at least micro-invasion in my nodes... but he was wrong. This is why the final pathology is based on after surgery. If they know for sure then they might to chemo first. But if they don't feel or see anything there is a chance you are all clear in the nodes. Granted the bigger the tumor the less likely... but even my big tumor didn't spread to the nodes.

3. I too had a left tumor, over the heart in the posterior region. In my case due to tumor size, small boob and location I had to get (and what was going on in the other boob) I had to do the bilateral mastectomy (BMX). Usually tumors 5cm or larger get radiation even if none of the nodes are involved. I got a pass... and I believe my radiation oncologist gave me a pass because the risk of damage to my heart/lungs given the location in the posterior region was high. 

Lumpectomies seem to get radiation. Radiation decisions should be discussed with a radiation oncologist (RO). Even my medical oncologist (onc or MO) differed this decision to her and my MO is head of the MO department. RO will take into consideration your risk of heart/lung damage. They do want to kill the cancer but not us in the process. I would question your surgeon about this. Ask if you should be discussing this before surgery just in case the risk is high and you decide you rather go with an MX (mastectomy). Chances are though if you can do a lumpectomy I'm betting the tumor isn't close to the chest wall and the heart won't be damaged.

4. HER2+ (3+) means you are positive for HER2+ receptors. Means you've got to many of them and they are telling your cancer to grow and grow fast. There are several meds they give that works really well. The oldest (just approved for early breast cancer in 2006) is Herceptin. Perjerta is also given as well in many cases. This of course depends on how big your tumor is. Herceptin is typically given with chemo because they find it is more effective this way.

5. You will get scans to see if your cancer has spread if you have symptoms. Many times you do not get scans if you have no symptoms, small tumor and no nodes or non-invasive cancer. I did get scans before surgery because I had 6 weeks before they could preform the surgery... so there was time. My BS ordered them. Usually I believe the MO orders them. I say my MO 2 weeks after my surgery when the final pathology was in. We all worried about distant metastasis  (distant mets) to other parts. Be sure you mention your  pain in your back and rib. Granted I have pain in my back but I know it's from something else.

6. feel free to ask more questions. Hang on. It's a bumpy ride but it won't be as bad as you think. It sounds all so horrible at the beginning. I'm coming up on my 4 years since diagnosis. Still here and still NED (no evidence of disease). 

Shasha10 BRCA is only part of the genetic mystery. There are probably other genetic factors but we don't have a test for them yet. Given that you are from the middle east and living in New York I know there is a good chance you may be Jewish. The BRCA gene is just a bit more common in Ashkenazi Jews. Not so in Sephardic Jews. If you are Jewish and truly of middle eastern heritage then your risk for BRCA is the same as anyone else's. But if the Jewish part of your family is from France, Germany or Eastern Europe than your risk for the BRCA gene is slightly elevated.

Moonflwr912 I found that out when I was first diagnosed and researching. I mentioned to my BS's NP that I was Ashkenazi Jewish and did I need to get BRCA testing. The genetic counselor said it was doubtful that and recommended that I didn't take the test. I almost didn't do it. Told the NP and she said, no BS wants you to do this. BTW I was only an adjunct instructor. My dad was and my sister is a professor though so  yes teaching is in my blood. I'm pretty good at explaining things but I was also a game designer too... I came up with the rules!

An almost 11 pound baby! And  natural! Geez. I wanted an epidural @ 7 months when I started having braxton-hicks. I saw no reason for something the size of a football to come out an opening the size of my ear canal without drugs. Nice drugs. 

I used EMLA @ first on my port. Forgot one day and my nurse was so good I felt nothing. All my nurses could access without a bit of pain. 

I love the old names. Went to a baby shower for a friend @ work last week. Her daughter is due in May and will be named Alice. I cannot wait to meet Cora. My daughter and her husband have a photo circle for family. They are not posting her pictures on social media for any and everyone to see. I like that also. 

Just home from another long day @ work. There was a shooting on our campus-in one of the dorms last night. Not much released yet other than not a student or an employee. I am befuddled. 

Much love

trisha, thanks for the explanation.  Sounds like a PITA.    Hopefully you will end up being able to reintroduce everything except for something you won't miss much.  Sounds like your food will be pretty bland for awhile.

ashla, what do you think of it?  Seems interesting.

Lago, no I think you're a no BS kind of person and very rational. 

mannettes, I wish I had had a PET scan before I started chemo just to be sure it hadn't spread anywhere else (though there has never been any evidence that it has, other than random mystery symptoms which so far have turned out to be nothing in particular).  It is probably a good idea to have a baseline from that, as well as perhaps a very thorough blood panel.  They will probably have you do chemo and Herceptin unless your tumor is very small.  It's not fun but it's probably not as bad as you fear.

I think the BS of art and design degrees would be fun! I have the BS of dissection and chemistry and things under a microscope then on to the hospital for the real education. Lots of BS though!!!!

I had all the scans during my first week of hell. Had several repeats during the past 20 months. Despite all normal except MUGAs and ECHOs I still worry about pain and mets. Probably always will. 

Sleep well dear friends. 

Reading Circle of Wives. Anyway-think that is the title. Will check and confirm. Mindless entertainment. Almost finished and have not quite figured out who did it. So enjoyable.

I don't have a BS I have a couple of BFAs (Bachelors in Fine Art) and MFA but they should be BS as in bullshit not Bachelors of Science. When I worked for Milton Bradley I designed the game strategy and anything that was 3D/plastic (industrial design background). When I did video games I did both including animation but I did come up with the games. The game artists did not do any game creation or strategy like me.

Hi all. I don't post here often but wanted to say that today is the 2 year anniversary of my BMX and DIEP recon, which followed my 16 rounds of chemo and then I had the 9 more rounds of Herceptin following. I have had a rough few weeks with anxiety etc, but I'm here and I'm happy that this "anniversary" will be past me tomorrow.  

I read along and appreciate all the information and guidance you all give to me and to others. Thank you!

Melster,

Keep Em coming!

Yippee! )))

Lago! Yay! I know they took their time measuring me. 5'4" and 3/4. . I always said 5'5" to everybody because what's a quarter of an inch? LOL.  

Messer hooray! 2 years!

Ashla I don't know how you keep finding that new info. You are an amazing reseacher. 

All of you with degrees and advanced degrees make me jealous. I always wanted to go to college. But i was a girl and as my Dad said" were not wasting money sending you. You'll just get married." Sigh. With 8 of us I knew they wouldn't though but I had to ask.  I went to a local tech school and took part time courses as I could afford them. But i did end up getting married and moving all around following his job. When we finally settled down near family, I had 4 kids to get through school and it was more important to send them. Now it won't pay for me to start a degree. I'd never be able to work enough to pay the bill. At 65 I can audit courses for free. I can learn as much as I want then. If I can still get to the campus! LOL.  

Lago I loved board games. Video games were few and far between as I only liked the puzzle ones like the 7th guest, gory but fun puzzles or that space one that sent them to a different planet to explore. Well that and the handheld Dr. MARIO..... LOL

MUCH LOVE TO ALL. 

Goutlaw I take the baby aspirin for my heart. Are you on Tamoxifen?  Cause that helps bones

Yes but doctor switching me to AL because he says its better!! My lower abdominal area is so sore& lower back now iggh

I just finished my final and number 6 chemo last Friday-April 4.  Have had a ruff four days but starting to feel a little human today.  I have three tumors in my left breast-this breast has her2.  I have one tumor in my right breast-not her2.  Chemo has pretty much taken the her2 tumors out and the right breast, the tumor has decreased significally.

I did the Brac test and it came back Negative.  My BS had originally said that if I tested negative for Brac, she would consider lumpectomies in both breast.  My head and heart has been wrapped around this.  I honestly am scared to death of masectomies.  I am 42DD so would want immediate reconstruction, but just dont want to go through everything a masectomy requires.  I am still working full time. 

Yesterday, I got bad news from my BS.  My MRI showed that the three tumors are not all in the bottom quad as she had thought.  One is more in the middle and deeeper-and she feels too close to the nipple.  She does not feel comfortable doing a lumpectomy now on the left-she would have to take half my boob, and says reoccurence is too iffy.  I am 49 years old.  She says she can still do the lumpectomy on my right side.  Right now-I am heartbroken and trying to wrap my head around even one masectomy, but definitely want to save one boob if I can.  If I can have feeling and my own nipple on at least one-I would feel better.

My question is-has anyone here ever had a masectomy on one side and a lumpectomy on the other?  What is everyones thoughts on this?  My BS says it is abnormal, but she will do it.

This whole experience has ben soooo much to go through and I am a strong woman.  Some days its really overwhelming.  My surgery will be early May, followed by rads on the right side if I chose lumpectomy there.

I appreciate everyones comments.  I need to make some decisions.

vettegirl I was also 49 when diagnosed. I had a BMX (both). Unlike you I was small, 34B but I too did not want to be boob-less nor did I want to deal with having to "put my boobs" on. My issue on the non cancer side was LCIS which indicated that I could get it again. Choosing to keep one nipple/boob so you have feeling is common. I thought I might do the same but then I decided for me it was best to not deal with increased risk of a new cancer. I had very very dense tissue and my tumor was quite large. Also in the posterior region over the heart. Then when they found the LCIS and recommended I remove both the decision was sealed.

The thing is that you will probably still need some surgery on the good boob so it can match your reconstructed boob. Depending on what type of reconstruction the match will be similar but not the same. In a bra you will look the same. You need to talk to a PS about your reconstruction options. For me I only had implants because I am thin with no belly or back. ( They can take it from your butt or thighs too but that is really involved). Here's a linky that explains all the different types of reconstruction. (Do note this PS has a bias against implants. For me implants were the best choice so don't let that sway you.)  Don't worry if you don't understand it fully but it's good to get an idea before you talk to your PS (Plastic surgeon).

If I were working I would have missed some time but you may do better than you think. 2 weeks after my BMX with tissue expanders I took a bus to a freelance gig and worked.

Forgot to mention I'm a 34D now! granted not as large as you but much larger than I expected. I'm a big girl now too

linda - I PM'ed you - all I ever had was echos, no MUGA, they are interchangeable.  I liked the echo because it is completely non-invasive.  I found that they pressed more on the sternum and from the side and underneath - not over the face of the breast.

vette girl I made a decision for BMX because of family history. They found the invasive Her2 in my prophylacticly removed breast.so I was glad to do it. 

But you do know that if you choose lumpectomy they will most likely do radiation. So you will need to find out about that. Just fyi. 

Linda, at times I had both echos and MUGA. No difference. If it makes you feel better my Cardiologist uses the echo. My MO does the Muga. If they need another look they will probably do a Muga. It's much m ore expensive and invasive in that they inject you with iv solution that is radio active. With the echo I had just had a surgery and asked that they use a new bottle of the gel and to avoid as much as possible the incisions.  They weren't happy but did use the new bottle rather than the open one so I could be sure it was sterile. 

Much love.