TRIPLE POSITIVE GROUP
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BeachMom just posting so you can see my dx/tx.
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Hi Ladies,
I am triple positive and had neoadjuvant therapy. Just had my lumpectomy and my onc was not happy with my final path. It looks like I had “no definite response” to presurgery treatment. Very upsetting as most of us +++ tend to do well with treatment. I’m wondering if my low grade tumor has to do with the ineffectiveness of the treatments??
Has anyone heard of a +++ not responding well to neoad treatment? I’m worried my poor response will give me a poorer outlook.
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Hi dear positive ladies,
Just checking in.
At youngandscared, It's so unfair to go through this at such a young age. But you have excellent chances to get through this and go on with your life. Nothing to add to coachvicky's great answer, I hope you find her words as empowering and soothing as I do. Thanks coachvicky!
Shellabela, congrats on your lipo and exchange! You go girl! I wish you an easy and fast recovery and no more cramping scares.
I still have my expander and will until the end of the year because my exchange was pushed away due to having had to receive radiation treatment. The good news is that I finished radiation treatment on Wednesday this week. Yay! My skin is brown in the are and feels burned but I have no fatigue and I am feeling great.
At the end of next week I will have my oophorectomy. Oncologist says he will wait a month and a half after radiation (therefore a month and a half after oophorectomy) to start me on aromatase inhibitors. I expected to start right away and I am a bit disappointed. I am scared to death of this cancer returning, since I didnt have a complete response or anything close to that after chemo and herceptin. I wanted to hit the hormonal path in the head with a hammer asap. Am I over-worrying about this?
Suburbs, glad to see you around, I hope that lingering infection is becoming a distant memory.
Love and peace to all,
LaughingGull
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I just realized I had not read the last page of posts when I sent my answer.
To Beachmom, you can see my treatment in my signature. I have tolerated all treatments pretty well, and as a general rule I tend to go with the most aggressive treatment available. My kids are young and if this cancer comes back and beats me I would regret not having tried the full kitchen sink approach. I had four rounds of Adryamicin+Cytoxan followed by four rounds of Taxotere+Herceptin+Perjeta, then surgery plus radiation. And now I will have oophorectomy and aromatase inhibitors, and I am also continuing the Herceptin+Perjeta.
Colleen, I really don't understand the role of grade in the prognosis, hopefully someone well informed will chime in. In the meantime, please take it easy on yourself and try not to worry too much. My cancer was grade 3, downgraded to grade 2 after five months of chemo, and I am worried that it remained so aggressive. Also there was quite a bit of cancer found both in my breast and my lymph nodes upon surgery. I was very very sad and disappointed and worried when I received the surgery results so I think I understand what you are going through. If your oncologist was hoping for better results it's normal that he (or she) is not happy, but what is the full picture, i.e. how does this result affect your prognosis? In my case I believe not much overall.
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Beachmom, I also had two surgeries to clear margins (no node involvement) and am doing 6 TCH treatments which will be followed by radiation and later will determine AI treatment. Unfortunately, I am having difficulty with Herceptin and it has been suspended until my heartflow comes back closer to what it was in March. Because of that I am grateful for the more aggressive treatment. My tumor was less than 2cm and I am 62. This board has been incredibly helpful.
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Laughing,
I'm so sorry you were also disappointed in the outcome of your chemo. It's a terrible feeling, to think you went through all of that and didn't get much out of it.
They also found three places of cancer when they did my lumpectomy instead of one like they thought. Still clean margins, but the MRI always said one tumor with a satellite; not three separate spots.My onc didn't seem concerned but my surgeon came in immediately saying she thought I should probably have a mastectomy now. They will be discussing all this about me next week and then meeting back with me to tell me what they think. Quite unnerving to have your life up in the air. I wish I was an “easy" case that followed expectations. This makes everything so much more stressful than it already was!
ETA: I apologize for sounding whiny or self-pitying. I’m normally the most cheerful person in the room! It’s just very hard right now; I know you all understand
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Colleen - you are not sounding whiney. You are sounding understandably frustrated. I think the not knowing what comes next is one of the hardest things so when you think you know and it gets changed, it's hard to regroup.
Jstarling - unfortunately, one of the SE of herceptin is it does a number on our hearts - the reason for such regular echos. I know there have been some clinical trials on shorter courses of treatment. Having to suspend or quit early may not be as much of a problem as once thought.
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There was a recent study suggesting six months of H may be as effective as 12. My MO is going to an ASCO conference in a few weeks and will look at the data and make a decision about her patients then. I must say there’s something in me that woukdn’t mind the full year if there’s any benefit at all. Once I signed onto the recommended tx, I’d almost prefer sticking with it unless I can be convinced cutting back to six months is every bit as good. I wish we were not in the first group of patients who might get the new protocol. I’d feel better if the research had come out several years ago
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colleen, your not sounding whiny and if so who cares. This is our life and we have the right to be whiny or crabby! We all understand.
So my chest area does not hurt very much but my legs, oh my. My PS did some lipo and fat grafting. I am bruised from my cha-cha area to my ankle area. Staying ahead of the pain.
Hope you are all having a wonderful day
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Thank you, Shelabela. Wishing you a very speedy recovery!
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I will be extremely happy if studies show 6 months is as good as 12! I had to quit after my first H alone tx. My EF went too low, so they pulled me off H. I had heard the the most benefit was with chemo, so I was hoping.
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hello ladies, sorry I have been out of touch. You are all in my daily prayers even if I am not online.
Shelabela - congrats on your exchange and recon surgery. I wish you a problem free and quick recovery. Take good care of yourself during this time. It is a long process and I had to learn patience after my DIEP surgery. Hope the pain in your legs gets better real soon! Glad you are seeing a counselor, better days are ahead for you. I think it's great that you got rid of the friends who were dragging you down, especially the insensitive one asking stupid questions. You (and all of us) need to be surrounded by people who lift you up and foster a positive outlook on life. Sending (((hugs)))
Welcome to all the newbies. You will find this group to be so helpful, informative and inspirational. They were and continue to be my greatest resource for strength as I move along in my cancer journey. I agree with everything in Coach Vicky's post - she has a great way of empowering and encouraging us all!
Youngandscared - I am so very sorry you have been diagnosed at such a young age. You are stronger than you might realize now and you WILL get through this. As strange as it might seem now, your life will be better for going through this experience. Remember we are always here for you to offer support and be a source of information if/when you need it. Sending (((hugs))) and prayers your way.
Colleen you are not being whiny at all and please feel at ease saying anything you feel with this group. We have all been in your shoes and there is no judgement here. This is the safest place I have to share my true feelings; my friends and family just don't get it. They think cancer is something you "get over" once you are done with surgery and treatments. I'm sorry they found more cancer during the lumpectomy. I had cancer in multiple places across the breast so mastectomy was my only choice. Sending prayers your way for strength and peace as you await the news from your doctors.
Beachmom - the decision on which protocol to do is a tough one. Size, grade, etc. are all factors and as individuals we respond to therapy differently. I chose to participate in a neoadjuvant clinical trial and did not do chemo. I had Herceptin and Perjeta every 3 weeks for one full year. My decision was based on results from a Mammaprint test that my MO ordered. I am on AI for 5 years. I had a good response, margins and lymph nodes clear. I wish you peace with your decision. Sending prayers and (((hugs)))
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Deni and all you ladies, thank you so much for your support and care. You are absolutely right that people just don’t get it! Everyone is waiting for me to be back to normal and I don’t think I’ll ever be the same; I’ll always have this fear hanging over me of Mets or recurrence. I know it will get easier with time but my life is changed forever. That doesn’t have to be a bad thing overall, and I pray I can use it to live a better life eventually, but right now I just feel completely isolated from my family and friends. Every time someone asks how I’m doing I want to scream, “Awful! It’s awful! I may be dying and I don’t know for sure and I have a million decisions to make with no clear good choices and I’m afraid I’ll die before my kids grow up and I’m AWFUL!!!” Instead I say “ok” and smile and try not to cry. Ugh.
My doctor called tonight and I missed the stinking call because it was 6:50 and I never expected her to call so late! She told me to call her in the office tomorrow, so I’ll try first thing. Hoping she’s talked to her colleague at Vanderbilt and has some news for me. I’ll keep you ladies updated. Love to all
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Colleen - I can completely relate. It is very frustrating that people expect us to be "normal" again when we're done with treatment. It is very difficult to give an honest answer to the question "how are you doing" when your mind is racing with so many thoughts and tough decisions. I found this community to be my safe place to be completely honest because most people in my life wouldn't know how to respond if I told them how I was really feeling while I was in the midst of recovering from surgeries and treatment. Cancer changes us forever but for me the change has been very positive. I know it may be difficult to understand that now with what you are going through, but life will be great again for you in the future! I made significant changes in my life since diagnosis that have really helped me gain a new perspective on life. I don't ever really think about recurrence but instead focus on all the joy in my life one day at a time. I got rid of stress and learned how to say yes to the things that truly matter, saying no to things I really don't want to do anyway and being much more thoughtful about how I spend my time.
The anxiety you are feeling now is perfectly normal and it will pass. Keep the faith and please let us know how we can help. I will say a prayer that you have good news for us after your talk with the doctor. (((Hugs)))
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deni you are my blessing today
thank you so much for taking the time to respond again to me. I am also praying to bring good news to the thread tomorrow! 0 -
deni1661 ... When you wrote: Cancer changes us forever but for me the change has been very positive. I know it may be difficult to understand that now with what you are going through, but life will be great again for you in the future! you gave everyone a wonderful gift of wisdom that only a true BC Thriver (not survivor) understands.
Thank you.
Vicky
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colleen, please update us after your call with your Dr! When friends would ask me "how are YOU?" With that pointed exaggerated "you" My typical answer would be... Just great, why shouldn't I be! I have $290 thousand medical team that has my back!"😀 That usually shuts them up right away. Lol.
I have discovered that you can not compare the before cancer "you" to the after cancer "you" . That you have to open up to change and be thankful there is still a "you"
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LaughingGull, thanks for your kind words. I’m still fighting that infection and growing a bit impatient for sure. It’s under control, as in not systemic, but still hanging around. I was warned it could take as long as a year. The treatment plan is being revisited this week.
ColleenS80, please keep us posted. We are all pulling for you. Please check in. Some of our group have dropped off the list. I worry about that. I know when things aren’t going so well, I used to post all the time. Now I kind of lurk in the shadows. This forum pulled me through some very dark days. I hope we can offer the same thing for you.
Off to work. I plan to make the day count. It’s been said before. Your priorities and focus get upended with a triple positive diagnosis. The road is longer with many twists and turns. Still, I plan to get to the other side, hopefully, better for the experience.
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that reminds me...anyone heard from cherry?
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tres - it looks like she hasn’t signed on since the end of May. I seem to remember one of her posts mentioning she was feeling overwhelmed - maybe she decided to take a break? I hope she is doing well
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Suburbs! I can't believe you're still fighting that infection. How frustrating. Hope it goes away -- permanently -- soon.
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hey ladies,
I spoke with onc. It looks pretty certain that I’ll be having mastectomy. But that’s ok. I just wish there was something we could do for the fact that I didn’t respond to treatment. Onc spoke with Dr Mayer at Vanderbilt and she suggested starting hormone therapy ASAP. They seem to think my cancer may be more hormone “motivated” since it didnt respond well to the HER2 drug onslaught. I guess all I can do isn’t hope they are right.
Hope you’re all doing well today.
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ColleenS80 ... If you have not heard me say this a million times ... I love my new boobs! Best wishes. Get what you want. Go to whippetmom's forum on BCO. It is Breast Implant Sizing 101.
Vicky
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I emailed Cherry.
Vicky
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colleen - I had that same thought about you potentially being more responsive to anti-hormonal therapy than chemo/targeted therapy due to your tumor growth being driven by estrogen rather than Her2+. Were you strongly ER+? Strongly Her2+? How old are you? If you are premenopausal you may want to talk to your MO about the value of a hyst/ooph or ovarian suppression so you can take an aromatase inhibitor rather than Tamoxifen, as they are thought to give an advantage, particularly for Her2+ patients.
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Hey specialk,
My numbers were ER 75%, PR 40%, HER2 3+
I’m 38. My onc talked about giving me a monthly shot that would suppress my ovaries (and said we would talk about possible ooph at a later point) and putting me on an aromatase inhibitor. That’s good to hear that they may be an advantage for her2 positive patients, I hadn’t heard that.
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and thanks coach Vicky!
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Colleen,
I'm doing the monthly Zoladex shot so I can take Aromasin. If you have any questions about that, let me know. Some breast cancer patients do Lupron instead of Zoladex. Lupron might be more convenient because it's every three months. I don't mind the Zoladex, but that's because I've kept my port, and I can get my port flushed at the same time.
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Colleen - I'm glad you have a decision regarding surgery and seem at peace with next steps. I'm with CoachVicky...I love my new boob too and I got a flat stomach out of this deal (I had DIEP flap). I say turn those lemons into lemonade! Please keep us posted on your surgery date
Suburbs - ugh....that stupid infection! I have you in my prayers it goes away once and for all.
Coach Vicky, thanks for your kind words. I learned to embrace this experience from you and many other thrivers in this group! You are all wonderful blessings in my life!0 -
suburbs, geez wish I had a magic wand to wave and make that infection go away!
Colleen, I was all for a BMX, I thought of it as a life saving surgery. With an added bonus, You get to choose your size !!!!
I am on Tamoxifen but wonder if it is the right one, I have not had a period since February of 2017. Had blood work 3 different times that show I am menopausal. Your thoughts ladies?
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