TRIPLE POSITIVE GROUP
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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.
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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!?
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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?
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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.
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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
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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!
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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!
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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
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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
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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)
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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
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Poseygirl, thanks for your post, for the reminder when you said: "The mental game changes, so I could be pretty “normal" for awhile and then crash boom. I think that's normal". So true, I just cried this morning out of the blue. Trying to pull my mental self together....you know the world is watching.
Thanks for the compliment on my pic's.
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May I ask a question that I have been pondering on for a while now? Please.
I was told by my surgeon after the biopsy, that I had IDC, approx. 2 c.m., was stage 1, grade 3, Her2. I have seen others on here with pretty much the same stage, grade etc with the same info under their dx's. After surgery (UMX), I was told that there was no lymph node involvement after they did a dissection and biopsy of 4 lymph nodes.
I HAD SOMEONE pm me MONTHS ago (this is how long I have had this on my mind) and tell me/ask me/question me why I was stage 1 when she was told that she was stage 2 and had the same size cancer and dx. I got a bit afraid, was I missing something? I called pathology and they said my cancer was approx. 2 c.m. Should I worry? Should I get perjeta or additional therapies.... because what if it is a bit over 2 c.m.?
Can anyone help address this? I do know about the new staging of cancer that I posted a few days ago. Do I even want to go there???????
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SpecialK - I hope it's not too late to thank you. I didn't see the pictures until today. Thank you so much for them! You are a beautiful person both inside and outside. Seeing you in the various stages made me cry. It was like reliving this whole year all over again. I just want to get back to my former pre-BC self again. This gives me so much hope that it will eventually happen.
I'm currently about 3 months out from my last Herceptin. A friend asked me recently if I feel like a Phoenix rising out of the ashes. She has someone close to her that had BC. I never quite thought of it like that, but it's so true. It's a total regrowth of skin, hair, and nails. Imperfections are starting to go away. There's a new glow to our skin. People are seeing that in me, and I totally see that in these after pictures. You were able to lose the weight as well. That is a huge inspiration. Exercise and diet is the key to all of this.
Anyway, I just wanted everyone to picture the whole Phoenix rising out of the ashes. I think of the Harry Potter scene every time. LOL! The good (rapid growing) cells that we lost will eventually be regenerated. It takes a lot of time, and there will still be bumps in the road. It's just good to know that it can and will happen.
Karen
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tld2017 - 1 cm, Stage 1A, Grade 2, triple positive here. Sorry I didn't see your post before your surgery. Hope you are only feeling mind discomfort today. The hardest part is not having a plan. I had already had a lumpectomy and brachytherapy before the final path report came back. The HER2 positive status really threw me for a loop as I hadn't expected to need chemo. However, my surgery anniversary has come and gone, I finished Herceptin last week and I'm having minimal SE's from the anti-hormone medication that I've been taking since May. I consider myself one of the lucky ones that my tumor was found early and had not spread to the lumpth nodes. I am also extremely grateful that I found these threads. I don't think this site is the easiest to navigate but I suggest you look for one that says "starting chemo on (month your will start) and starting rads on (month you will start). My chemo group has gotten very close even though our diagnoses are different.
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moody - here is the description of stage 1 breast cancer from this site:
Stage I describes invasive breast cancer (cancer cells are breaking through to or invading normal surrounding breast tissue) Stage I is divided into subcategories known as IA and IB.
Stage IA describes invasive breast cancer in which:
- the tumor measures up to 2 centimeters AND
- the cancer has not spread outside the breast; no lymph nodes are involved
Stage IB describes invasive breast cancer in which:
- there is no tumor in the breast; instead, small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – are found in the lymph nodes OR
- there is a tumor in the breast that is no larger than 2 centimeters, and there are small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – in the lymph nodes
Microscopic invasion is possible in stage I breast cancer. In microscopic invasion, the cancer cells have just started to invade the tissue outside the lining of the duct or lobule, but the invading cancer cells can't measure more than 1 millimeter
Hap is correct about the treatment you received - I had a 2.6cm tumor and two positive lymph nodes, one the size of a stage 1 breast lump, and you did the same regimen that I did. If I was treated with current guidelines I would have had neoadjuvent chemo with Perjeta, but because I was diagnosed before Perjeta was approved I did not receive it. Try not to worry going forward, it serves no purpose.
Also, the new staging guidelines are for people who are diagnosed after the new parameters were configured. It does not change the staging we all received and the treatment that was based on that staging. The stage we were given will remain.
bucsgirl - OMG your puppies are so cute in the new avatar! Love them! I am glad you got value from the pics I posted. You have seen me in person and know what I look like now, but you would have no way to know what I looked like in treatment, so I am glad the photos provided you a way to gauge improvement as you leave the brutal immediate phase of treatment behind. A phoenix rising from the ashes is indeed what happens!
npreece - were your suspicious axillary nodes biopsied before you started treatment? Neoadjuvent staging without biopsy is a generality so if the nodes were not looked at your staging is a generality to guide treatment decisions, but it is not written in stone.
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ladies,
so my MO will not do any blood works for my post treatment follow up.. she will just do a PE. but my Pcp is good with labs and i am folllowing up with her too. i wonder what labs your MO does on your follow up after treatment. i only have one remaining herceptin. thanks! Specialk, our walking merck manual,any thoughts?thanks
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SpecialK- Thank you for the reply! They did see the nodes on an ultrasound and biopsied one of them. I was too scared to ask how many they saw at the time because I was in total shock!!!! It came back positive. My onc said it looked like 4-5 were enlarged on the images. The CT report just said multiple lymph nodes. This may be a dumb question, but how will they know which lymph nodes to take out at the time of surgery?
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Hi everybody, have been reading all the posts, a lot of things happening here, I noticed this thread was behind So, what’s for dinner thread counting number of pages but now it officially is longer. I am there a lot, this and my August chemo group that moved to FB are my moving on activities so to speak, at some point I felt I had to stop reading about cancer because it started to define who I am.
Welcome all new members, sorry you had to join us but this board has been my liveline.
PoseyGirl, this is a great news that your MRI came back clean, thorasic backpain can take months to fix I have been told, mine went away because of larger doses steroids I got on EC but now almost two weeks PFC it sneaks upon me mostly because I did not do my exercises as diligently trying to make it through brutal EC.
tld, Her2 and Grade 1 is unusual but I believe we have at least two members on this thread who were Grade 1 because I remember reading their discussion about their pathology reports. I also red two local blogs, I am in Sweden, both women had Grade 1, one of them being TP snd another one being TN. According to our national guidelines all Her2+ patients need chemo treatment but there is a chapter about the tumors that are less than 0,5 cm where they discuss the benefits vs risks of chemo and Herceptin but after discussing my case with some specialists I have been told that the latest trend is to offer some chemo to all Her2+ patients as soon as any invasive bc is found mainly due to its aggressiveness.
Moodyblues, thank you for the link. A woman in our FB support group mentioned this study, she is in a clinical trial and doing AC two weeks apart because her oncologist told her it was more effective. I now forwarded her this article. I was very hesitant about my EC, you probably all remember that but now I am done and I am glad I did otherwise I had always wondered whether I did enough.
Suburbs, that comment was just stupid, I do not think your colleague ment to hurt you just as you said, sometimes people are just being insensitive without realizing it. Hopefully she will never get experience that herself. Look at SpecialK, we will get there, I really hope so. I look horrendous right now even though my brows and lashes grew during two last ECs but my face is sort of grey-ish, never had it on Taxol, I gained 10 kg because I ate like a horse while on EC, my face cleared from the zits and pimples but left some holes in my facial skin I never had before. And my hair did not grew anything in a month so I am a fuzzy peach but if I pull the hair fall off.
Hap, I hope your meeting with the heart surgeon went well and you get some answers that explains what is causing your heart condition.
Anyone who did radiation? I am starting in Feb and wonder if I can do anything to prevent the skin from burning. I bought aloe vera plant and products and even some calendula products that I use right now. I am planning a trip with my family in the end of March, my last radiation will be March 8th and I really do not want to miss this trip.
Another question, I am in chemopause since the beginning of September. I had my last period right after my first Taxol. I have joint pain, especially in my feet, I have hot flashes, them being even worse while on EC and my breasts are very how shall I put it, sort of smooth, no lumps in them for the first time since I remember myself as an adult woman, I always had fibrocystic breasts. Now I am PFC and will start Tamoxifen in a week. I red the booklet that says hot flashes and joint pain is common SE. Is it going to be worse compared to what I am having right now or less?
Cherry
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Thank you Specialk and Hap. I thought I was correct but, this lady threw me for a loop when she stated what she did. I was sure that I was stage 1 but, she insisted I was stage 2. I waited for a very long time to ask you all because I was afraid to find out bad news. I read and re-read many times the stages listed on BCO but, was a bit confused about micro invasion part because of the way it was explained.
Thanks again!
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Thank you HapB, I will go to a preparation class next week I am sure they will say the same thing. I just wanted to know whether you guys have some piece of advice. No proton is available for bc here I have been told too
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Some people may wonder what I’m doing on this site so long after diagnosis, but what you see below is one of the reasons I remain. This is a photo, taken this evening, of yours truly and coachvicky. You can tell from her postings on this thread that she is strong, smart, and beautiful. I can confirm, having met her and her awesome DH, that this is absolutely accurate! This crappy disease has made sisters of us, and while I wish this isn’t how we had to meet, I’m sure glad we did.
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Oh my gosh...look at you two beauties!! How did you meet up? Vicky, are you in Florida? That is so great.
Npreece, we have similar dx’s. They took 16 nodes out. They went for everything they could find...I suspect it might be similar for you (or perhaps different surgeons have different philosophies on how many to take).
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I will tell you all this was an awesome meeting tonight. Special K has guided me through every step of my journey. ... And I am so grateful. On Monday I will meet with her oncologist. And you know what? She's writing a letter of introduction for me. I remain so grateful to you that I can get peace.
Love, Vicky
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For those of you who have had BMX, do you get any routine imaging to check for recurrence? At my hospital, they say I would not have any routine imaging after mastectomy (except an MRI every 3 years to check the implants).
and for those of you who had lumpectomy, how often in the first couple of years did you have mammo/sono (or MRI, if applicable)? thanks so much!
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coach - you are too kind, and it has been a privilege
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If we were not on this thread, you would never look at our chest.
Now that you looked, are they not great?
They felt great to me! BYW ... today is one day with my new girls
Love, Vicky
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Hi Red!
I had a lumpectomy, and for the first 2.5 years, I had mammos every 6 months. During the first two years, my mammos were read immediately by the radiologist, just in case she saw something and wanted to get an ultrasound. Only once did the radiologist order an ultrasound, and it was because the breast cancer center had just begun using 3-D mammo technology and "things looked different." (Nothing was wrong.) In September of 2017, I graduated to annual mammos.
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Yes, they are great! Should I say that, lol!Happy First Birthday to your girls!
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Cherry, Agree with HapB in using nothing on the breasts during radiation. The Cancer center I went to even sold their own brand of lotion plus recommended many others.....along with coupons!! I sat in the waiting room for weeks with women suffering from burns/extreme redness. They all used creams! A cancer diagnosis is a hit to the wallet. Don’t buy a ton of stuff (like I did 🤪) that you will end up not using. Just take extra special care of yourself throughout the treatment
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