TRIPLE POSITIVE GROUP
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thanks all, I meet with the BS on Friday and going to have a discussion about this. I don’t want to make a decision until I know ow effective the treatment was.
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Hi. So many new people here. It’s difficult to keep up. For those doing neoadjuvant chemo followed by surgery, you have more time to mull over your decision. It may feel like a blessing and a curse. Until surgery and final pathology, you don’t know where you stand. Lymph node involvement will drive a radiation decision. Immediate reconstruction is also sometimes an option. It’s a lot to take on board. Easier said than done. Sharpen your pencil and make a list of pros and cons. Schedule more time with your BS and PS if you need help. Prepare your list of questions. Ask someone you trust to review the pros and cons with you. Check out the threads here that cover implants, expanders, Diep, lumpectomy, and going flat. It’s difficult to contemplate when you are feeling rotten from the demon TCHP or TH. Please take your time and ask questions. It’s your recovery. All the best
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Princess, I hope that you get the results that you are hoping for on the 25th from your echo cardiogram. I go for my baseline echo cardiogram tomorrow. I'm also having a CT scan done. I am sorry to hear that you have lost your mother. I miss my mom and dad everyday.
I felt as my MO and OS really took the time to go over my surgical options. They both expressed the importance of considering not just the medical but also the emotional aspect of the surgery decision. I elected to do the bilateral mastectomy because I knew that was the best decision for me, I had the surgery on August 30th. I met with both my OS and PS this Monday and they both were very pleased on how I'm healing and I finally got my surgical drains taken out. I feel so much better now that the drains are out. I go for my baseline echo cardiogram tomorrow along with my CT scan and my port surgery is next week.
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Hi Sisterlong
Glad to know you are feeling better now especially with the drains out.
Thanks for your kind words on my mum’s passing. Not a day goes by without me thinking if there was something I failed to do but I try my best to concentrate on my own health right now. Phew! It’s just a lot. Sorry about your parents once again.
I had my echo cardiogram today and will be seeing both my PS and MO next Tuesday so am keeping my fingers crossed.
Take good care of yourself and make sure to get all the rest you need.
Princess
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Sisterstrong - glad to hear you are recovering well from surgery. You will continue to feel better each day especially now that the drains are out! I’m glad you mentioned the emotional part of the surgery decision. It is an important factor in our overall recovery and to have your BS and PS support both considerations is a blessing.
Wishing you the best next week with your scans and port surgery0 -
Princess- sorry to hear about your mom’s passing. Praying you have good results on your echo. Hugs0
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This post is cross-posted in the August 2018 chemo board, but I wanted to post it here as well:
Hello ladies.. just checking in! I've been absent and will have to go back and catch up on everybody's posts. But first I want to update you all!
So, the reason I haven't been checking in is because I have been completely disgusted with anything and everything that has to do with chemo and cancer. I've been so sick and dehydrated. Oncologist offered for me to come in for IV, but I refused because I couldn't even stomach the thought of going to that room and sitting in that chair. Just seeing the words, perjeta, carboplatin etc, make my stomach turn. I was avoiding anything that remotely made me think of anything involving any of it. I texted my onc nurse and told her I thought I was done. I couldn't handle it anymore...
But then, today I had my follow-up ultrasound with BS. In just 2 treatments my tumor has gone from the size of a lime to practically non-existent. All he can see is just a tiny bit around the titanium clip. I still have to finish all 6 treatments and have the year of herceptin. But now it feels so worth it. I just have to give in to the fact that I will be miserably sick and in bed and unable to eat for the first 10 days after treatment. Days 11 and 12 are functional, but still miserable. Day 13 I feel almost normal and day 14 I feel 100%. If I can just keep reminding myself that every time, and just push through it, I'll be good to go.
Hang in there ladies! It is all worth it in the end!
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J blue sky hang in there! You could do this! I just finished my 6 tchp chemo and I too wanted to give up after every infusion. My side effects were accumulative and had few other health scares along the way. But I did it and so can you!!! I am so happy to hear of your good results!!! Keep it up🙏🙏🙏🙏🙏0
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J-Bluesky -first let me say THAT IS GREAT NEWS! You go girl!
Today I completed my 2nd TCHP treatment, went well, got home and felt tired but if things go like last time I will be good until Saturday afternoon. I think I have my bowel issue under control so I'm hoping the SE's this time will be better.
I did get the results back today from my biopsy yesterday, news is some good, some bad. The one lesion was a benign fibroadenoma. I only had a chance t do some minor research, but doesn't look like this will turn cancerous. The other lesion was DCIS, I had suspected this since it was in the same general area as my other two tumors. I should find out more tomorrow on what this means, but in my head it shouldn't really change my course treatment (6 Chemo + HP), 1 full year of HP, surgery, possible radiation, and reconstruction. The only thing that might are my surgery options, but if the tumors shrink, like J_Bluesky , I would think lumpectomy is still a viable option.
Oh yeah, and today my hair and I had a falling out --
, this is the second time - I think the next time they act out I will kick the remaining to the curb.Thinking of everyone, stay strong,
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J bluesky - Congrats on your results!
If you are not already getting everything there is to combat nausea, talk to your oncologist about adding to your arsenal.
I did 6 rounds of TCHP and told my MO that I feared nausea and vomiting more than anything. And was willing to add 30 minutes to my infusion time in order to get Emend. I was also given oral Zofran, Compazine, Ativan and Decadron, to take on a schedule and/or as needed. I felt queasy from time to time, but rarely worse than that. It helps a LOT if you can stay out in front of the nausea and weakness.
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Bluesky: Just want to add my voice to the chorus and say how proud I am of you. I, too, just finished TCHP round 6. I've been where you are and in fact at this moment I am miserable with allll the post-chemo symptoms. BUT......each treatment I counted down. After #5 I told my MO I can't do it anymore. Yet somehow here I am, done with that phase except for the SEs that I know will subside in a week and with God's grace I'll never have to go through that again. I have surgery ahead, and radiation, and yes many more months of HP but I'll make it. We all will. Please just always remember what a wonderful wonderful source of support this site is. I can honestly say I wouldn't have made it without you all. Again, so proud of you. Sending you all the love to get the rest of the way
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bluesky! GREAT news!! I am so very happy for you!
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Bluesky- congrats on the great results! Hang in there, this too shall pass. Each day you are closer to being finished0
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Hi all, thanks for all you support and wishes. It wasn't great news, BS said she would not consider lumpectomy because this is the third instance of cancer in my right breast, even though DCIS, it is grade 3 - hard, which means it is aggressive and has a higher rate of recurrence. Plus it is now 3 areas we are looking at all aggressive in nature. I did go home and do some research and have decided the risk is to high so I'm going to have a BMX. Of course next step is figuring out type of reconstruction. No radiation which is good news.
The question I do wonder about is I don't think my treatment includes anything to battle hormone receptors, my treatment is 6 rounds of TCHP with a full year of H and maybe P. I'm not sure any of these address hormone receptors. My ER was only 38% at the highest and PR 1%, maybe they aren't high enough to worry about but I do, I plan on asking my MO.
Day 1 after 2nd infusion, only tired today and I think I have constipation managed, keeping close eye on this as it was horrible.
Thanks again for support, hugs and well wishes to all
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MACTAZ—has there been no mention of an AI? It wouldn’t start until after your treatment but it might be worth asking about at some point.
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Ingerp, they didn't mention that, in fact I guess I initially assumed P Was the hormone therapy but dueto reading on my own figured it was HER2+ related. Thanks much, Iwill ask him,
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MACTAZ, best wishes with your reconstruction decision. I often believe the choice of Plastic Surgeon is one of the most important ones we make. Please go to Whippetmon's breast implant 101 forum on BCO. She can really help with decisions.
Have a great weekend everyone.
Love, Vicky
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Thanks Coachvicky, I will do that.
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MACTAZ - I would definitely ask about the AI. My MO put me on AI right at the start as part of the clinical trial; he told me more than once the AI was my best defense against recurrence, in my case anyway.
Good luck with your reconstruction decision. I agree with Coach Vicky, a good PS will guide you through all the options available and discuss risks/benefits. I went back to my BS and PS for 3 weeks with many questions and they were unbelievably patient, supportive and helpful to both me and my husband. I am very pleased with the results and my scars are minimal.
I hope you are feeling better after your infusion - constipation is the worst.
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Good morning ladies. To all of you in the throws of hard chemo, hang in there. It's so very hard but just take it day by day. I finished chemo in February, had a BMX in March and now I only have 2 more Herceptin/Perjeta infusions left!!! Nov 1 is my last infusion. Yay, almost through another phase of treatment!
I made the decision to do a Bilateral Mastectomy with Direct to Implant procedure. I'm so thankful I went that way. I look proportional, I actually stayed a 36C and I pretty much look the same. My DH is the only one who knows the difference and he loves me regardless. It's emotionally hard but honestly, loosing my hair was harder than my breasts, for me. Everyone is different. Be good to yourself and make the decision that brings you peace. Ultimately you have to feel like it's the right thing for you.
I will start Arimidex soon, which comes with its own problems. I think my doctor never revealed all of this at once but in stages so I could take it in. I'm focused on finishing H/P well, trusting God to get me through the next phase. He's taken me through a lot,, He will continue to be with me.
God bless you all,
❤️ Jenny
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Jenny, congrats!🎉. 🎈 Best wishes and hope the last goes well. Hu
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Thanks Deni1661, I will definitely ask my MO about AI.
Regarding PS, I am interested in DEIP flap, but unfortunately here in Greenville, SC, I can't seem to locate many PS that perform this procedure. I might need to settle but I'm just not crazy about implant. I am a busty gal and am concerned about weight differential between actual remaining breast and implant. I have back structural issues and don't want to have back pain due to overcompensating for that difference. Maybe I'm making this out to be more than it is but hopefully PS can help me with those questions
Thanks
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MACTAZ, please check out the DIEP threads here. You can ask about surgeons in your area or consider going to NOLA. The recovery time is longer. I don’t regret my decision one bit though I have had my issues. Also, as Coach mentioned, whippetmom is a wealth of information and very kind about answering private messages and giving thoughtful advice. All the best in your decision making process.
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MACTAZ
I think it was Moody Blues that wrote something like her boobs entered the room before she did. That was my case. Ruts in my shoulders and my back hurt.
I really like my silicone implants. They are soft and the right size for my body. I am full but not overly busty.
Vicky
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Good day ladies.
I am back from both PS and MO’s appointments. Good news, my numbers came up from 45 to 50 so I can resume HP but my MO thought I was too vain to hold off with my exchange surgery which was meant to be next Tuesday. Anyway, the 3 of us (MO, PS and myself) had a meeting after seeing them individually (first time seeing 2 doctors in the same room) we have agreed to move the surgery till mid November after 3 sessions of HP (hopefully)
So this Thursday (in 2days) will be my first HP since 9 weeks break. Glad things are moving forawrd with that. The surgery can wait. Health first💪🏼
I will also have another echo cardiogram after the second dose just to be sure how things are
Hey Deni1661, I hope you are having a good day?
Princess❤️
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Good day ladies.
I am back from both PS and MO’s appointments. Good news, my numbers came up from 45 to 50 so I can resume HP but my MO thought I was too vain to hold off with my exchange surgery which was meant to be next Tuesday. Anyway, the 3 of us (MO, PS and myself) had a meeting after seeing them individually (first time seeing 2 doctors in the same room) we have agreed to move the surgery till mid November after 3 sessions of HP (hopefully)
So this Thursday (in 2days) will be my first HP since 9 weeks break. Glad things are moving forawrd with that. The surgery can wait. Health first💪🏼
I will also have another echo cardiogram after the second dose just to be sure how things are
Hey Deni1661, I hope you are having a good day?
Princess❤️
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I am, too, considering surgery and my options. After chemo, I am thinking implants, small ones. My breasts are very small to begin with and I am on the tiny side overall. I am not even sure if fat grafting will be possible, since there's not much to take from. (Am working on that as I write this with the help of Nutella 😁 I know, I shouldn't... well, but it's chemo day and I am allowing myself this treat) I am just starting the process of finding a PS...I don't want to do DIEP or anything similar due to history of back problems, I fear a change in my belly muscles, and there's not much to take from. Last Friday I've learnt that I am completelly negative in terms of genetics, in the whole set of onco genes. So my BMX would be completelly my wish, with no genetic or oncological indication. For peace of mind, so to say. Am I that vain/anxious/dumb considering BMX?? I am probably a big worrier. I had 2 lumpectomies, since the 1st one had dirty margin, the 2nd one had close margins! Really, with triple positive and lymphovascular invasion and Ki67 very high 65% (I think, not exactly sure if not higher) — am I too stressed out to think about another operation? With my young age and two preschoolers at home? My MO thinks it's deffinitelly not necessary, but she expressed understanding if I decide to do it. She just didn't want to give any advice concerning the choice of a PS - she said it's up to me and I have to find one on my own that I will have confidence in.
Pardon my long rant... I just had the news with genetics I was waiting for and the app. with MO was today. So my head is reeling...
And another thing is the radiation. My MO looked in my stats concerning rads indication criteria and she said that with BMX, I probably wouldn't need radiation at all, since the tumor was high up (meaning away from chest wall) and the positive node had micromets). That is another big issue in my decision making. I think the whole process of operation versus a month of radiation would be very similar in terms of time of my being "disabled" and the radiation would pose maybe even a bigger problem for my family with daily trips to the C centre.
phew, another rant. Well, I'm full of this. Thanks ladies for the space here to vent my pressing thoughts out. And pardon my Engl., I probably sound akward at times.
Background is, that in my country, immediate reconstructions are considered a rarity. Some MOs even activelly discourage them with words like "you must first be healthy to start reconstruction, wait 2 years..." And BMX is a rarity in itself. MY BS is a big advocator of lumpectomies, doing studies and teaching at universities in this topic. He will go through the roof when he learns about my wish. He was very happy with the result of his two operations on me, and I must say it really looks good. But sorry, man, the close margins put me over the edge together with pathology.
Theres an ulrasound next week planned on my cancer boob, since it is hurting. I hope it's nothing.
Well, no I must have really gone over an allowed post lenght. I would greatly appreciate some thoughts from you who had the patience to read this novel... And I totally understand those who hadn't.
Thanks for the safe space here....
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Great news Princess_Meg! So glad you shared.
JaBoo, it's a really tough decision. Have you considered getting a second opinion from another MO?
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Hi JaBoo
I do understand how you are feeling, it is a lot to take and there's never an easy decision.
I was dxed last year at 38 like you. Also negative on genetic testing.
Here's my opinion, please remember it is only an opinion. From all I have gathered from my little research, having a double mx isn't necessary especially with a negative on genetic testing and it doesn't change prognosis. MD Anderson won't even recommend that.
If I were you, I would have radiation because of the lymph node involvement instead of a BMX. You didn't state your stage but I think it is also stage 2A like mine.
All the best with whatever you decide to do. At the end of the day, we all have to make decisions we feel at peace with.
Princess❤️
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Princess, thank you very much for your opinion, I do realize it is your view of things. But still it is very helpful to read various opinions, thank you. I do realize the prognisis is not different with BMX or lumpectomy, what concerns me are the close margins (under 1mm!) and the agressivity of my tumor. So I think that BMX may make the religional recurrence chances smaller. But I'm not sure about this and making my research now.
Moderators, thank you for your question, yes, I am consifldering a second and a third opinion. I think I need someone who has more experience with young patients. But I like my MO very much. I have already left a MO who was behaving like I was 60 and was even suggesting tx for that age (without chemo!!!!). I left immediatelly.
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