TRIPLE POSITIVE GROUP
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This might have been asked before but does anyone know the average time between surgery and recurrence for triple positive IDC?
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My MO told me that recurrence was most likely during the first three years after diagnosis. After five years, she said that recurrence chances went down. However, maybe someone out there has the actual data or studies showing this. Now that I'm five years out, my MO has reduced her surveillance of me from seeing me every three months to seeing me every six months.
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WC3, this following link might confirm what ElaineTherese says:
https://cancerres.aacrjournals.org/content/79/4_Su...
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Just a quick post to wish all of you wonderful ladies a safe and blessed Thanksgiving,!
I've been trying to get back to my normal life. Succeeding in some areas but failing in others. I've been on Kadcyla since September. It's not great but not awful either. My side effects have been manageable. With the holidays approaching I've been a little melancholy. I hadn't been diagnosed till after the holidays last year and things just seem so much more precious this year.
Steam ahead warriors. We need to kick Cancer's ass!
🤗🤗
Dawn
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ElaineTheresa, Gudrun:
Thanks for the reply and the study.
That's interesting that the risk of recurrence remains higher in the long term in the HER2 negative, ER+ group than the HER2 positive, ER+ group. It seems to imply that the estrogen receptors in the HER2 positive group do not play as active a role in cell proliferation as with the HER2 negative group. I wonder why.
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wC3.
I look at it as Herceptin is such a powerful drug. I’m just finishing my year of Herceptin, so grateful that it was discovered before I got this nasty disease.
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WC3–when I got my 2018 dx my RO told me that HER2+ tumors are more aggressive but have better outcomes, specifically because of Herceptin. I too am thankful it was available for my treatment.
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Hello ladies, back after some time to say how grateful I am this Thanksgiving for the wonderful people here, so willing to share their time and insights. It’s exactly a year since my BMX surgery, and the news that “DCIS” was actually Triple+ Stage 1 so chemo & herceptin and so on were necessitated. Fast forward to today, post surgery, chemo, cold capping (worked!), reconstruction, tamoxifen now letrozole, zometa (yuck), and with 4 more Herceptin’s to go (woo hoo!) and some fat grafting booked this week to improve the reconstruction, I’m grateful for early detection, wonderful doctors, and supportive family & friends, and work colleagues, plus great insurance (very lucky for that).
It’s also a time for a lot of reflection. While I’m back 120% at work, do I enjoy it? While chemo and the intense part of treatment was difficult, it was also time with little distraction from family, more time with my husband - which we both enjoyed as he’s already retired, and work from home which was less stressful than time in the office & on the road. We all focus on not letting cancer “defeat” or “define” us, but there’s no question it changes your perspective, and if it makes you want to change other things in your life because of the insights it brings, I guess that is ok. (But I’m still not sure / fighting feeling “defeated” if I decide to make a big change on the work front! It feels like letting people down, especially women coming up behind me who like seeing a superwoman style return, and maybe also gratifying other people who didn‘t expect me back at all! Grrrr....). Is it too soon to know what I really want?
How many people go right back to exactly the life they had, or close, and how many of us make a big change? If you made a big change by choice (not due to medical issues), how long did you take to decide? What helped you make the call? I just don't want to wake up in 3 years and think I didn't learn a thing from this experience, or find some other health issue crops up for me or my husband and we wasted the time we could have enjoyed. How you spend your days is how you spend your life.
There’s no right answer & no actual answer for me yet, but I appreciate having a place to think on these issues without judgement & with the perspective of others who have or are struggling with the same challenges. In the meantime, I’m back to working like a nutter on the road every week (you can get herceptin SQ treatment in a lot of countries FYI), I’m looking forward to the fat grafting (did I ever think I would say that?!) and I’m hopeful someday soon to get to Baltimore & the famous Vinnie to finish off my reconstruction in style.
Thanks for being an amazing community of superwomen!
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Boogirl,
What an insightful and thought-provoking post. You articulated beautifully what I ponder every single day. My diagnosis was different than yours—I was diagnosed in April 2018 with Stage 3C triple positive with lots of positive lymph nodes. I truly believed I was going to die, and I kind of shut down emotionally, put my head down, just showed up and did my treatment. I was lucky and got a pCR after my mastectomy in October 2018. For the first time, I started believing that I might not be toast in the immediate future and thinking about what the cancer was “supposed to mean.” I finished up my Herceptin, had a prophylactic mastectomy on the other breast, a hysterectomy, and started Nerlynx and an AI. I’m tired and achy, but I’m alive and so, so grateful for that, especially considering where I started. And I’m grateful for all of the same things you mentioned—a loving and supportive husband and family, co-workers, and great insurance.
I have a very demanding and stressful job that pretty much defines me. I returned to work full-time in January after the first mastectomy and radiation, and I walked into a utter s*** storm that has led to many sleepless nights and tears. I often question “what if it recurs—is it this how I want to have spent these cancer-free (as far as I know) days?” I spent October through December (when I finished radiation) in my cancer-bubble world and it was as if real life was suspended. I spent a lot of time making all kinds of promises to myself that things would be different and I would lose my control freak, Type A personality, but about two-and-a half hours after returning to work, it all went out the window.
But several months ago I read something that Hapa posted. Let me say that I think she is one of the most introspective and honest people on these boards and is awesome. She posted something about her stressful job, but noted that she realized that she actually liked being in the thick of it when bad things happened at work—something about enjoying the adrenaline, knowing what was going on, and being part of of the fix. When I read that, I felt like somebody poured a bucket of cold water over me. I was so conditioned to whine “I’m so stressed” that it never dawned on me that it might be okay to see the stress as stimulating and acceptable.
That’s where I am now and I still don’t know whether I want to stay in this job, or whether it’s so bad if I do. Part of me believes recurrence is inevitable and I need to stay for the great insurance. Right now, I’m trying not to look at cancer as a life-changing, life-defining catalyst, but rather a nudge to get me to change my perspective to just be more honest and accepting about how I really feel about things. I may end up changing my job, selling my house, and moving back to my hometown, but in the meantime, I don’t want to be so fixated on “should I” or “shouldn’t I” that I overlook the good things in my currently imperfect situation.
Sorry for rambling, but your post struck a chord for me. I also appreciate all the posters who raise these questions and make me think.
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My doc told me that the risk of recurrance goes down at the 5 year mark, but I was diagnosed metastatic at the 10 year mark, so it's like predicting the weather I suppose.
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Hi Everyone,
I haven't been here in a while but it's great to see everyone helping each other get through this. I learned so much from this forum.... and continue to... Anyway, it's been over 7 years since my diagnosis of Triple positive, 2B. And I've now been on Tamoxifen for 6 years. My side effects are manageable, but I'm worried about it being a drag on my system. I feel it's messing with my blood sugar because I now get yeast infections really easily,and it messes with my digestion and skin. I can mitigate with supplements but I'm so ready to be done. Yet I'm terrified of not taking it. I don't want to switch to an AI. How many years of tam/AI are your MO's recommending these days? Is this indefinite?
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momwriter, have you seen the link I posted above on 28th November? Maybe it is of some help for you. Of course, it would be interesting to hear from others on this board. G
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Gudrun,
Thank you, that article is encouraging. I'll see what my MO says next time I see her.
I was just curious to see what others are doing. Since I've been on tamoxifen ever since I finished chemo, I don't really know what my body's new normal is now that I'm a post-chemo menopausal 54 yo (and not a pre/peri-menopausal unmedicated 47).
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you're welcome momwriter. I'm also curious about what others decide or what they are told by their doctors.
BTW, after two years of Tam plus Zoladex, and a break due to her pregnancy, my daughter has resumed taking Tam this week. She very much hopes she will be through in three years, hopefully of course with no recurrence.
Best wishes to everybody.
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ACK - need some reassurance! I just received my pre-authorization for my DMX. Everything is authorized BUT it states it is covering OUTPATIENT facility charges. I was told and expected at least an overnight in the hospital. My procedure isn't even scheduled until 11am. Has anyone done a DMX outpatient?
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rlmessy: I did. Had Bmx with immediate implant reconstruction (pre-pec). In at 5am, rolled into the OR at 7:30, out the door around 5pm. My surgery lasted six hours, the rest was spent in the recovery room. I had to pee before they would let me leave. Sent me out the door with a rx for 30 oxycodone and a little kit that was made by volunteers, with an apron for my drains which was awesome and some pillows that I didn't use. I had no problems with doing it outpaitent; hospitals are a great place to catch infections.
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wanted to come and report back that my endometrial biopsy was benign. So that part was a relief. It was 8 months between bleeding episodes, but my lining is very thick from the tamoxifen, and the bleeding is so heavy and debilitating. I went anemic I lost so much blood. Sooo...now MO wants to put me back on lupron. I hated lupron, but I can't really live with this unexpected demon of the "psycho bleeding episode at any time in your life" either. GYN said endometrial ablation was an option, but if I did get endometrial cancer it would be very hard to tell if he did that procedure. Both said I had to keep taking tamoxifen.
What to do...what to do...
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Tres,
Yay about the biopsy!
I know you hate Lupron (is it the every three months shot?), but you could always try Zoladex (monthly). I'm not sure if it would make a difference because they both do the same thing (chemically shut down the ovaries). I tolerate Zoladex well, but that's just me. Why do they want you to stay on Tamoxifen?
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rlmessy:
They might very well intend to send you home the same day but hospitals are doing a new thing now where they are billing overnight patients as outpatients. I had a 4 day hospital stay billed as outpatient. It's ridiculous.
As I understand it, they do this because if they bill as inpatient, the bill is not as itemized and the insurance can reject the whole thing. If they bill as outpatient, there is more itemized billing and the hospital can seek payment on each item seperately.
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rlmessy- I'm scheduled for a mastectomy and axillary dissection on the 27th, as an outpatient procedure. I was alarmed abiut this and asked, and in my case they are indeed planning to have me go home the day of. The reasoning I was given is hospitals are good places to get infections (& with the most virulent strains of common bacteria, like c dif and mrsa) so you're actually statistically safer recuperating at home so long as you're medically stable. It does make me nervous, though.
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Hi heartshapedbox,
I also had mastectomy with ALND. For me, the plan was that I was going to stay only one night at the hospital, going home the next day. I was very concerned about this plan, because I thought that I would need more time to recover in the hospital, and that I wouldn't be in good enough shape to go home so soon. I even asked beforehand about staying a few additional days in the hospital -the answer was no. In the end, I found the recovery easier than I anticipated. I spent that one night in the hospital, and I had a roommate with noisy visitors; early in the morning the next day, I begged to be sent home. Really, I didn't need hospital care (or painkillers, after the first day I was fine with Tylenol), and I was much more comfortable at home. I had good support at home with my parents, though, I didn't have to do any chores and could really focus on recovering, not sure what support system you will have at home post-surgery. But this is very doable. You will be sore for a few days and the drain is annoying, but you get better quickly. Will your mastectomy be single or double?
I also started right away with physical therapy to recover mobility, and with gentle exercise...going out for long walks, then cycling classes, physical therapy, would go to the gym to do stretching exercises. I am a swimmer, and I was back in the pool as soon as the incisions were closed, one month later, and I was able to swim all strokes including backstroke, and stretch all the way.
Best of luck with your surgery!
LaughingGull
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rlmessy - keep in mind that outpatient is classified as 23 hour observation, so you can spend the equivalent of a night and still be considered outpatient. If you are not comfortable with a release sooner than that, or have uncontrolled pain at the time of discharge, definitely speak up. Your BS and/or PS should have the ability to amend orders with cause.
tres - glad to hear the biopsy was neg. Have done the uncontrolled bleeding thing, ugh - I opted for total hyst/ooph, was 45 at the time - this was unrelated to breast cancer, I had numerous uterine fibroids.
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When I had my BMX, I stayed 2 nites, because they couldn't get the pain under control, plus I was going home alone. I had no one to help me. They eventually set up an RN to come out twice a week for the first week, but that first night alone was terrifying. I'm surprised I didn't get a raging infection at home from not changing my bandages. I couldn't do it myself.
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Hi all...I went back and listened to the surgical consult and my surgeon did say overnight and most women are ready to go home next day. That made me feel better.
This has just been so much longer than I expected. I am having nightmares that what started at 1a has grown and spread because we waited so long.
Less than a week to go!!
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rljes: that sounds very, very tough. I had unilateral, not bilateral, mastectomy, so that probably made a big difference: I could roll to my non-surgery side and move around. I remember thinking at the time that bilateral mastectomy would be so much harder, because how can you even get up from bed? They should have sent you help sooner. Of course you couldn't change your bandages.
I ended up having a second mastectomy a few months later, which was easier because it was in the non-cancer side, therefore no axillary surgery.
It's amazing how differently different people experience pain. For me, with all my breast-cancer-related surgeries (port placement, UMX+ALND, second UMX, implants) I only needed painkillers the day of the surgery, and the next day went home with Tylenol and was fine.
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Hi rimessy, the main reason that I saw to do neoadjuvent chemo was so that they could test whether the chemo was working on my tumors. For example, after 2 treatments of TCHP, I had an ultrasound that showed that the drugs were working. If they were not working, then the MO could have the option to try a different drug combination that was more effective. Once you take out the tumor, there is nothing to test unless you get more tumors. Since each individual could react better or worse on a drug regimen, I found this approach comforting. Since my MO and I were on the same page, things were easier for me. I’m sorry you’ve had some challenges with your treatment team. I hope things get better. Best wishes for a successful surgery next week
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hey all, new study out about mushrooms and breast cancer, different types help both estrogen + and triple negative. here are two are rifles, the second talks about the different mushroom benefits
https://www.webmd.com/breast-cancer/news/19991210/mushrooms-may-play-role-in-breast-cancer-prevention-treatment0 -
Has anyone taken a break from tamoxifen to have a baby? I’m 35 and was planning on having another baby. My MO says it possible, but I’m worried about the hormone changes during pregnancy contributing to recurrance.
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What % were you re: ER+? My cancer tested 95%. Nevertheless, my oncologist says that my cancer was driven more by the overexpression of HER2. What does your oncologist think? There are threads on BCO about women coming off Tamoxifen to have a baby, and they report some successes in that area. You might want to use the Search function to find them. Good luck!
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Dear Jkeet, my daughter is one of them.
You might just follow the threads about becoming pregnant that I was taking part in.
I tried but was not able to link these threads here.
Best wishes to you, G
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