TRIPLE POSITIVE GROUP

kae_md99

lol.i just let it be.. just told them that he is my husband. btw,im asian and i cant seem

to give up on soy sauce .what do you ladies think of Bragg liquid aminos?...

tld2017

So, ladies, my first breast cancer doctor appt was today. She said my case is highly unusual and she has not seen it before in her career to her recollection. I am HER2+ but Grade 1. Apparently, those two contradict each other. So she is going to talk to her team about it but is concerned. She wants the mass out ASAP so my surgery is actually Friday morning, the day after tomorrow! I've got a day to prepare for surgery! The doctor will do a lumpectomy, needle loc, and sentinel node biopsy. After the results all return from that, including a 2nd HER2 test just confirm that it really is HER2+, I will get 18 weeks of chemotherapy and about 6 weeks of radiation. All of that treatment is dependent on the multitude of tests that I will getting in the coming weeks to confirm (I pray!) that it has not spread. If it has spread, the treatment will be even more aggressive. Just wanted to put this out there in case anyone has heard of someone that was Grade 1 but HER2+. Thank you so very much! You are literally the only people that I can speak to about all of this and I'm grateful that I found you!

Cowgirl13

tld, I believe there are two ways to test for HER2. I don't remember exactly but Special K will know and she checks in regularly. My lumpectomy was a very easy surgery for me. Keep us posted. Thinking good thoughts for you on Friday.

tld2017

HapB, I'm glad you are doing well! Did you need chemo? So you were a grade 1 and they switched you to grade 2?

tld2017

Thanks, Cowgirl, for your response. You were diagnosed in 2009 and still doing well - this is wonderful news! Were you given chemo?

moodyblues

I saw this here on breastcancer.org.  A recent one at that.  Please tell me why.  You get through all of this to have a study that comes out saying THIS is better.  Geez Louise!

http://www.breastcancer.org/research-news/dose-dense-chemo-improves-early-stage-outcomes

Going to have to start drinking.    

SpecialK

tld - one thing to keep in mind is that the grade you have so far is from a biopsy sample. Breast cancer tumors are not homogenous - grade can differ from different areas of the tumor. Grade is determined by looking at three aspects of the cells. Each of these three aspects is given a score from 1-3. The scores are added together to get a final number which corresponds to the grade, with 3-5 being grade 1, 6-7 being grade 2, and 8-9 being grade 3. The area examined are mitosis (how fast are the cells dividing), nuclear pleomorphism ( the appearance of the cells), and tubule formation or differentiation (how well the cells are forming normal structure). Grading of the cells is dependent on how many of them are doing certain things - i.e., say for tubule formation, to earn a score of 3 less than 10% of the cells are forming normal tubular structure - but some of this may be subjective to the pathologist. Many labs have two pathologists examine the slides to reach a common conclusion. All of this to say, that this is a snapshot - and it may change if your surgery is done first and a greater area of the tumor can be examined. Most Her2+ patients have higher grade tumors - often grade 3 because of the aggressiveness of the Her2 driven aspect, but this is not an absolute. I would also imagine that to do reflex or confirmatory testing for Her2 status a different (there are several testing kits for Her2) testing platform will be used to confirm the initial biopsy based findings. Good luck and let us know what happens!

Cowgirl13

tld, I was given chemo. Taxotere and Carboplatin (+herceptin for a year). When I found out I would need chemo I told the oncologist that I would rather dead then have chemo. I was terrified as I had seen my mother go through 2 rounds of chemo in the 70s. Chemo was vastly different from today. So back to my chemo, fortunately I really liked my onc and he had had a wonderful demeanor. So I had to do chemo as I was triple positive. At the end of the consultation he showed me the chemo room which was bright and had lots of light. Really good feeling in the room. He also introduced me to one of the chemo nurses because he knew she rode horses too and told her that I also rode. So it was really cool to talk to her about horses! After that I felt like I could do chemo and that it was a 'sign'. More later I have to leave for a catsit--I'm a catsitter.

deni1661

Specialk thank you so very much for posting your pictures. You are truly a beautiful person. I can't tell you how much it helps to know that I might look better some day! I look at pictures of myself now and I can't believe how rough I look. My 7 year old granddaughter said I look a year older every time she sees me and I see her once a week lol. Most days I accept the way I look and don't beat myself up about it.

Hapb I doubt you look as horrible as you think, we are our worse critics. Would any of us think a burn victim or someone with scars is horrible looking? I guess the point I was trying to make is that we're all beautiful and how we look shouldn't prevent us from enjoying life!

deni1661

tld so sorry you have to be here but this is a wonderful place to find info and unconditional support! Sending prayers your way for a successful surgery tomorrow with clear lymph nodes and margins. Hugs

deni1661

Kae - so glad to see your post! I've been worried about you and pray your pain is better. You're smart not to let stupid comments from others bother you. I notice many people don't think before they speak. Specialk's pictures show us that we will get back to looking like ourselves someday.

deni1661

KB870 - yay your bleeding nose problem is gone! How long after treatment did it take? Mine still bleeds every day and I had my last Herceptin Aug 30th. I thought maybe it was the AI causing the nose bleeds

deni1661

Faithhope- welcome to our group, sorry you have to be here but you will find wonderful support and info. Congrats on your last chemo tomorrow! I had what my MO called 99% pCR because I had clear lymph nodes and margins with only a few single cancer cells remaining in the breast (I had UMX). I participated in a neoadjuvant clinical trial and did not have chemo, only Herceptin and Perjeta. I feel blessed to have the results I did and I pray you have the same when you have your surgery in February. Hugs

deni1661

Moody - do they come out with these new studies to confuse and frustrate us more? This article goes way against what my MO told me and the basis of the trial I participated in. I don't know what to believe!

Suburbs

kae_md99, I am a big fan of Dr Braggs unfiltered vinegar. I have not tried the amino acids but why not. Couldn't hurt. I love soy sauce and sushi and make a couple Thai dishes that are favorites. I need to ask my MO about soy. I'm not eating tofu but I do like a bit of soy sauce.

Someone asked me today why I am still working and said I should hang up my skates after all I had been through. I have at least 10 years to retirement. I felt like he thought I looked older than I am. Frankly, it was depressing. I just crawled into bed for a nap. What a day.

Thanks for listening

ElaineTherese

Ugh, Suburbs! That was N-A-S-T-Y. What a loser! One of the advantages of my job is that the oldest members of the faculty are men, and they never think they're too old to work. Some of my colleagues are men in their 70s; at 50, I'm still considered "young" by many of them.

deni1661

Suburbs, that comment was so insensitive! Some people are just stupid. Tomorrow will be a better day. Hugs

kae_md99

hap,

the expanders were truly barbaric!!!!

Suburbs

ElaineTherese and deni1661, thank you for your support!It's funny how a good nights sleep can turn things around. I don't think my colleague's comments were intended to be malicious. I have found that when it comes to people that are not in your inner circle, they really just want to know that you are ok and have a good prognosis. I try to put on my party face for work and keep things light. Staying positive for my work colleagues and staff helps me too. If I am having a bad day, I work from home. So, I am going to put on my party face and my big girl pants and go do battle. Thank God it's Friday!

Npreece

New here! After reading one of the articles someone posted, I was just wondering if any of you had a pathological complete response at the time of your surgery? I am in the middle of my Treatments and I can't physically feel or find the primary tumor anymore. I'm praying for a complete response to ease my fears that the cancer is going to advance. I know it's no guarantee but I need something positive to think about.

moodyblues

Deni.  I thought the same thing about the article,  I'm thinking that in 6 months to a year they will come up with something different!?

moodyblues

Hapb.  They've come a long, long way though especially for us HER2 gals, thank God (and I do mean Him) for giving a man wisdom to pursue Herceptin.  I am grateful!  I too took HRT (Prempro) for several years and did not feel good about using it.  I eventually changed to a product CombiPatch the very lowest dose they had (0.05/0.14 mg) and several times, I took a few months break from it.  I stopped a month before dx'd with BC.  When I looked at the warnings on the patch it listed invasive BC as one of the things that may occur due to the use of this product.  Now I'm not saying it was this product but, I wish I would have never, ever, ever used HRT.  I have told my daughters to never use HRT!  

My genetic tests came back wonderful so, I haven't passed the BRCA gene to my girls but, they were made aware that they have to be diligent with this terrible disease

Have you decided about that job you were called on?

moodyblues

Npreece.  I am sorry that you had to join us but, I have found this site to be a 'mind' saver.  The DX of BC is an awful thing and most of us are numb for a long time.  Fear, worry and confusion come with the unknown and the ladies on here helped me so much.  Questions answered, tips, links, encouragement, hurrahs given, comfort and laughter shared.  So much more between the lines from our ladies.  I am grateful for this place, I feel it helped me keep my sanity and truly allowed me to express things that the outside world just didn't 'get'.  Please feel free to ask questions more than once if you don't understand something.   By the way, I did not have neoadjuvant treatment so, no for me on the PCR question.  

Suburbs

Npreece, I had a PCR after 6 rounds of TCHP. I was so freaked out that I had a meltdown and insisted on an MRI after 4th round. My lump never went away due to bruising after biopsy. If it wasn't working, I was going to skip the recon. I understand your anxiety. Everyone has this experience. And even if you can no longer feel a tumor, you still may not get clean margins. The final pathology is the ultimate determinate of response. That takes a week or two after surgery. Hang in there. It's a 50/50 chance roughly to get a PCR when your triple positive. The TCHP is brutal but it works. Sending positive vibes

Npreece

Moody-Thanks for the warm welcome!

Suburbs-Thanks for responding! I'm experiencing lots of anxiety! My onc had me staged at 2b then I guess it changed to 3a once he saw a chest Ct that showed "multiple axillary nodes" that were enlarged. I'm already experiencing lymphedema symptoms and I cannot find any information on people who have lymphedema before surgery. I actually had this lymphedema before my diagnosis, but didn't know what it was...I just know it's from the cancer in my lymph nodes, but I can't find anyone with a similar story. He seems to believe me and set me up with a PT who specializes in lymphedema. I'm going to talk to her about it! I have three TCHP treatments down and three to go! Praying for a PCR and complete healing! This group is awesome! Thanks again!

deni1661

suburbs, I agree about the comments from others. I didn't mean to sound negative. People really just don't know what to say and in most cases they are not trying to hurt our feelings. I try not to let others deflate my mood. I am having one of those "ugly" days today...just not feeling myself, more pain than usual and so I stayed home. I think sometimes we all need a day to regroup. Today is my day to pamper myself and push work to the side!

deni1661

Npreece - welcome to our group. You will find unconditional support and lots of great information here. I am grateful to all the women here for their encouragement, inspiration and understanding.

I'm sorry you're experiencing lymphedema symptoms already on top of everything else you are going through. Going to PT will help tremendously. I had cording after my mastectomy and my PT got rid of all the tightness and 4 cords. One came back recently so I am going to start PT again soon. I hope the PT helps you too.

The anxiety is unfortunately common, especially as you get close to surgery. I found meditation and talking about my fears in this group and the surgery thread (there are many to pick from) really helped to calm my fears. As I was being wheeled into surgery, I kept repeating "I am cancer free". That helped to calm me a bit too. I had what my MO called 99% pCR because I had clear lymph nodes and margins with only a few single cancer cells remaining in the breast (I had UMX). I participated in a neoadjuvant clinical trial and did not have chemo, only Herceptin and Perjeta. I feel blessed to have the results I did and I pray you have the same when you have your surgery. Hugs

Suburbs

deni1661, no worries at all. I did not take any comments as negative, just the opposite. It's great to be heard and to get some rallying support. I agree with your approach. Sometimes a day off is the right medicine. I plan to make this weekend count and pamper myself too. Have a good weekend

PoseyGirl

Hi there everyone, it's been a couple weeks since I was in...I've tried to read through the last 4-5 pages!

Welcome to everyone starting out. It's brutally hard and as mentioned, there is lots of shock. I remember saying to one of the nurses “but this just snuck up on me!!!" And she replied “yes, that's how it is for everyone". There really are so many people here with great information.

Hapb, I think your job related reply was great and hopefully you'll be raring to go in several months. Thank you very much for being there while I was waiting for results on my MRI for my upper thoracic achiness. It was clear, and showed mild degeneration in the disks. So I might have arthritis starting there. I'm trying to emotionally re-stabilize. I'm actually doing fine on the AI. So that's good. I do have some anemia I need to follow up on again.

Moody, your pics are lovely!! And SpecialK, you do NOT look over 60 . Beautiful!! I remember looking really awful at the tail end of chemo; I have one pic that is utterly upsetting. I looked really old, wan, and ill.

Npreece, I had a pcr after chemo. As mentioned, studies don't show a huge difference for those who achieve or don't achieve pcr. It's still considered a very good and preferred thing, but it's much more predictive (so far, anyhow) For other subtypes. I think the presence of hormone positivity affects that result I felt a big change from the first four AC treatments, but I think all treatments helped me.

I'm trying to eat well, I work out four times a week and walk my dog 2-3 times a day. I'm pursuing some interests. The mental game changes, so I could be pretty “normal" for awhile and then crash boom. I think that's normal. I started a closed FB group for local bc ladies 9 months ago and now there are 35. Its a real cross section of subtypes and stages. A couple triple negative women (both under 40) recurred within a year of diagnosis, and a friend of mine after 2.5 years. There are about 5 triple positive girls between 1 and 4 years out from dx - so far ok (pray to God that this continues)

Blownaway

Hapb - I continued to work all through surgery, chemo, rads. It was tough and I know what you mean about showing your face at work when you feel bad and think you look awful. I wore my wigs and piled on extra makeup, especially eyeliner when all my lashes fell out. The worst was the weight gain. UGG! I finally had to quit when I realized how much I was struggling due to cognitive issues. I commend you for even wanting to go back to work. I filed for disability and never looked back but I still get up every morning and put on makeup just for myself. Even if I'm not going anywhere. it just makes me feel better because I've aged 10 years in the last 4