TRIPLE POSITIVE GROUP

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  • debiann
    debiann Member Posts: 1,200
    edited August 2015

    Ton Lee,

    I don't know how much validity there is to leaving the healthy breast so stray cancer cells have somewhere to call home, but I had the exact same thought and for weeks thought I would do a uni. 

    In the end, vanity got the better of me cause I have to admit, my healthy breast was saggy and not too pretty. I found that after menopause I lost a lot of sensation in my nipples. Don't know if that's normal. The healthy breast wasn't useful to me, so I didn't mind seeing it go. Had my healthy breast been "prettier", I would have had a harder time losing it.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited August 2015

    Kate, I also had a UMX. My biggest reason for wanting to keep my breast was for sensation. My risk of developing BC in the other side is pretty low. I decided to go smaller so I had a reduction/lift on the left. My breast aren't completely even but they weren't in the first place. I also had the same thoughts as TonLee when I was first diagnosed. I wanted to give it another place to come back. My MO and nurse navigator thought I was crazy when I suggested it. BTW, my genetic testing came back negative

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  • RobinLK
    RobinLK Member Posts: 840
    edited August 2015

    My BS had suggested ovarian suppression with an AI before the trials were concluded. MO said no. I think he is leaning toward removal as I have no way of knowing if I stop cycling unless I get scans done. My PET and US showed evidence of cycling. There was concern about an area in one of my ovaries. It was polycystic, no surprise, my tubes were polycystic and removed during my hyst in '99.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2015

    RobinLK,

    I wonder if/when MO will recommend an oomph. I'm doing ovarian suppression and an AI, but will I really have to get a shot, every month, for 10 years? Ugh.

    TonLee and Mommato3:

    One reason I opted for a lumpectomy is 1) for sensation, and 2) because I'll get more monitoring. I know lots of women who've said that they chose a BMX to avoid the scanxiety of mammograms. But, I don't mind the mammos if it means that experienced health care people are checking me out more frequently for recurrence.

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  • debiann
    debiann Member Posts: 1,200
    edited August 2015

    I'm post menopausal, so no one is suggesting removing the ovaries, but I wish they would. I'd love to remove all unnecessary parts, lol.

    Years ago I had the uterus removed, but kept the ovaries, thought they would do me good. Now a very estrogen+ bc. Thanks ovaries :(

    There was a woman in her 70's at my chemo center with ovarian cancer. Like, me, she had the uterus out pre-meno. Yikes. Would happily get them out!

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  • Kthielen
    Kthielen Member Posts: 194
    edited August 2015

    I had a bilateral mastectomy and my BS tried to talk me in to keeping the healthy breast. I am a nurse and have seen too many patients who have had recurrences in there "healthy" breast years after their uni mastectomy, I new what my decision would be if I ever had breast cancer and low and behold it happened to me!!! Never was given an option for lumpectomy unfortunately bc a lumpectomy would have been much easier! According to the ultrasound it looked like the cancer had spread thru my right breast although the pet scan showed only 2 tumors and 2 lymph nodes. Anyway, I am happy with my decision even though it has been a LONG process, I feel I was as aggressive as I could be and mentally that's what gives me peace of mind. I am having a hysterectomy on Sept. 8th, I'm not thrilled about it and how it will affect my sex life but it's better than getting cancer again!!


    Kathy

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  • Gretagirl
    Gretagirl Member Posts: 182
    edited August 2015

    good morning all. Herceptin went well yesterday. The nurse told me use Ocean nasal spray for my nose and so far I have had a small amount of blood on one side. Got my labs yesterday and they took a nose dive from last week! WBC was half of last week red cell down hematocrit and hemoglobin down and platelets down. I was surprised cause I was expecting if it was going to drop it would have done so 7-10 days out not 14. Is the normal?.

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  • lago
    lago Member Posts: 17,186
    edited August 2015

    In defense of Tonlee's theory. I read an article a few years ago that there was a theory that breast cancer recurred in distant places because those cells that got away were looking to "go home" IE the same locations they came from. Since it was removed with surgery they end up metastasizing in other organs.

    Not that I agree but it's a theory.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited August 2015

    It's my understanding that if you get BC in your other breast years down the road that it's a new occurrence not a recurrence. I would have preferred a LX too but it wasn't recommended because I had a second tiny spot right behind the primary. And I still would have lost my nipple due to the location.

    Elaine, my MO said there is a limit to the number of years you can do OS. I didn't ask what that number was because I'm scheduled for an ooph in September.

    Robin, couldn't your MO check your hormone levels to see if you stay in menopause with OS. My MO said she's never had a patient not respond to OS.

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    that's one thing I wanted to speak with my surgeon about is there any studies showing that mastectomy causes more metastic cancers a lot to think about!

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  • Suladog
    Suladog Member Posts: 952
    edited August 2015

    Steph,

    Haven't heard that but I do know that both times I had cancer both rumors were very small 1 cm the first time 7mm the last time. I could have had a LX both times but when they looked at the breasts in both cases there were more things that were brewing and I 'd have been back in a couple of years dealing with the whole thing all over again. I'm glad I did an Mx because I wouldn't want to be having chemo etc every three years. 25 yrs between diagnoses was bad enough

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  • MMay
    MMay Member Posts: 27
    edited August 2015

    Two weeks out from my first TCH and the hair decided it needed to leave. Started falling out on Wednesday and by Thursday handfuls. Shaved it off Thursday evening. It was not as hard as I thought it would be and fortunately I have a nice looking head. 😀 I bought a cute wig awhile back but I think I'm just going to go all natural. So one more step in my journey checked off. Next up dose number two next Thursday. I had a uni in June. I told them to take them both but due to a blood clot issue I have they only took one for now and I have the option to go back after chemo is done and take the other one. I could have had a Lx but just wanted them to take it all. As of now i have chose to not do reconstruction ever. I am very small chested and it is not that important to me right now. No regrets.

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  • debiann
    debiann Member Posts: 1,200
    edited August 2015

    That's a good way if thinking of it mmay, a nasty checklist of things we just have to get through. So you've checked off a biggee "lost hair", and your still ok. Yay! 

    I wore my wig only once, too uncomfortable. I preferred hats, scarfs or the little terry cloth turbins at home. 

    Good luck with round two!

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  • Birdysmom
    Birdysmom Member Posts: 58
    edited August 2015

    Hello all! Thank goodness for this site. I'm piping up to share, but am still really new to all this. Was dx'd triple +, stage 3c, at age 44 with scant family history of BC. (Gene test is being processed due to Jewish background, may have that defective gene. My boobs are time bombs 'cause of that)

    Tumor in breast too large for surgery, so their shrinking it first with chemo. Cancer part, just over 2cm, is surrounded by over 5cm of disorganized scar-like internal tissue attached to skin & nipple. Just finished first administration of herceptin, perjeta, carboplatin, & taxotere. Gee whiz, what a cocktail!

    I'm learning ALOT from this site & will share as things progress. What really helps is keeping a positive attitude. Not easy, but worth it:-)


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2015

    Hi Birdysmom!

    I had neoadjuvant chemo, too. It wiped out the active cancer in my breast and lymph node, and I was able to get a lumpectomy. Hope your chemo works for you!

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  • MMay
    MMay Member Posts: 27
    edited August 2015

    Birdysmom...Glad you found the group! Wonderful support and good advice from experience. I'm new too with so many questions and concerns...all these ladies have been wonderful. Good luck with everything. Hope your SE's are few and everything goes smoothly!

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  • SusanHG123
    SusanHG123 Member Posts: 414
    edited August 2015

    Kate,

    I had a UNI because my BS and MO would not do both due to the poor state of my health. Had the 2nd 6 months later at the recommendation of both BS and MO. But-my path was and still is long and windy and not the norm.

    Herceptin infusion times-mine were all at 90 minutes. I I had 17 of the 52 calculated weeks when my LVEF tanked @ below 30%. I started @ above 60%, dropped to below 40%, increased after a break to above 50%, then tanked to the never never land of heart failure and banned from H for life. Still on cardiac drugs. The plan was to recover my heart with cardiac meds, wean off, and be a happy camper. Nope. Everytime I try to wean off my shortness of breath increases. After stopping H my LVEF increased to above 40% then dropped back to below 40%. H is the life saver for those who tolerate-and that is most women.

    ESDs and EBD-have been on all options. Gained weight, bone and joint pain, massive fatigue, more pain. Had breaks from 2 weeks to 3 months. Every time I went back on started again. Now when I go off for a break the symptoms do not go completely away. Again-great drugs for those that tolerate. I am really looking now at quality versus quantity.

    Much love

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  • lago
    lago Member Posts: 17,186
    edited August 2015

    SusanHG you are 3 years NED! That's huge. You have passed the time when most recurrences happen. You know there's a chance that you did enough treatment to remain NED.

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  • TonLee
    TonLee Member Posts: 2,626
    edited August 2015

    I've been skimming some of the posts. I really miss connecting with you ladies! Not sure if it's the 5th year cancer-versary in Sept that brought me back, for the moment more consistently, or that a woman near and dear to me was just diagnosed triple positive at 38. She's a research nut and will leave no stone unturned. I told her about this site. Hope she takes my advice and visits at least once. The scans can't find her original tumor....just huge cancer in lymph. Anyone else have that here?

    To all the new women. I am so sorry you had to find us, but thank God you did! After I did the majority of my research on BC, this site really helped me with the application of that knowledge. By reading those who have gone before, I knew for instance, right down to the day when my hair would fall out, what happens during the dreaded steroid crash, etc. (LAGO is a rock star!)

    Currently, we are in the middle of moving. I love the new place, LOVE it. But the move is exhausting. My husband insists we do it ourselves like the previous 23 moves for the most part...But, 3 1/2 weeks out of spinal surgery, my back is not loving it. And I hope it's the move, but I've dropped those 5 vanity pounds that I usually have to really work to get rid of.....on top of not working out at all (just walking 5-7 miles a day). Isn't it ironic? Before BC, that would be reason enough to throw a serious party! Now it's all suspicion and narrow eyes.

    Have a great day ladies! I'm back to the move!

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  • lago
    lago Member Posts: 17,186
    edited August 2015

    Ha ha TonLee I'm no rockstar but thanks. What you did leave out is you were sure you get mets and you did not! Not sure if you remember that.Will be celebrating 5 years NED right before you on August 31st…almost September.

    Thanks for starting this thread.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2015

    tonlee - sounds like your friend may have an occult cancer - it is pretty unusual but there are a few who post on BCO that have had it. If you put "occult" in the search box you will get links to a number of threads with posts from people in the same situation, I tried to link my search but the link didn't carry over. I am so glad to see you back - regardless of the reason!! And yay for our five years - mine is in September too! Lago was just ahead of us. You both had started chemo just before me due to my prolonged surgical saga - which still continues - I currently only have one implant, and I will be forever grateful for the support provided by both of you when I finally arrived on this thread. Hope the move is going well, but be careful and don't hurt your back!

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  • ashla
    ashla Member Posts: 1,581
    edited August 2015

    Oh my!

    Four of my guardian angels on one page in the forum ! Susan Hg, Tonlee, Lago and Special K!

    All the girls who made my 'That was the year that was' and wished it wasn't ....easier to bear!

    Hi all and great news that you're reaching the 5 year mark !

    YIPPEE

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2015

    ashla - how sweet! Good to see you!

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  • lago
    lago Member Posts: 17,186
    edited August 2015

    We all will be forever bonded. Some day we will meet in person.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2015

    lago - all of us meeting in person would be awesome!

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited August 2015

    My daughter just had her geneti testing done at age 33, all was clear, bracca 1 and 2, but they told her to come back in 10 unless something happened prior to that? So what does that tell you? Get mammo at 35, and she is built like me so she will probably have dense breasts. They have her whole genetic map, but they don't know all the maps yet. As they find out, they will know more. She lives in the Boston area, so not sure which cancer research clinic did the test? So they are still working on cancer processing....

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  • LisaGH
    LisaGH Member Posts: 242
    edited August 2015

    Hi.It's been a while since I have been on here. I hope everyone is doing great. I have moved to Florida a few months ago. I appreciate this group and the other threads. Definitely great support here.

    Take care! Great group here now & back then.

    Lisa

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  • Gretagirl
    Gretagirl Member Posts: 182
    edited August 2015

    Good morning to all. Well I had to shave head Sunday or at least hubby did it for me. I cried but was good after it was done. Right now I have a buzz cut but I am sure this will be gone soon cause pieces of it are falling too. I go for second TCH tomorrow. Praying all goes well. Have a great day everyone!

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited August 2015

    It grows back Gretagirl!!

    I always treated each completed chemo as a small victory! I will be thinking of you tomorrow and sending you lots of prayers and good vibes!


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  • KateB79
    KateB79 Member Posts: 747
    edited August 2015

    Sending you good vibes, Gretagirl.

    I start Thursday with TCHP and, other than the bizarre and scary dream I had last night about having a terrible reaction to the infusion--my brain showing anxiety even when I feel okay while I'm awake--I'm ready to start.

    Question for all: any advice for dosing dexamethasone? It says to take two tablets twice a day on the day before, the day of, and the day after chemo, but that could mean almost anything. I have a call in to the MO, but thought I'd ask the experts. :)

    xo

    -kate

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