Lumpectomy Lounge....let's talk!
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wow, bb, my history is similar. DCIS from biopsy then IDC after lx, no nodes but TN. I see your hormone status changed? From er/pr- to triple +? Is that correct? They didn't have it right at all. I see you have a mx scheduled
And lisaz, we've got 2 Lisa's here now! Mine also changed from DCIS to IDC as you see above. They told me initially with the DCIS id need lx and rads well that changed as it might for you. That brings it to stage 1 but still it's still very small. They took 4 nodes even when they thought was only DCIS in the beginning and they were negative and you said your mri was negative right so assuming your nodes will be too. Keep us updated. I'm almost 14 months since surgery, and 1yr since start of chemo, 9 months PFC (post final chemo, initially I thought that meant post f*cking chemo and I was surprised that everyone was using that acronym but then eventually figured it out, but like mine better!) Youll learn lots here. Keep asking questions. We are all so glad to be helping anyone else get through thi
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Hi Lisaj,
Actually, I was told that my DCIS was ER/PR negative, and the IDC they found from lumpectomy was ER/PR positive with HER2+++. Some variety, huh? The IDC is multi focal (5 mm, 4 mm, 3 mm, and 2 mm), so I was told that mastectomy was the way to go. It's coming up this Monday and I'm getting more and more anxious.
Thankfully the nodes were clear. But there is chemo in my future too. You must be relieved it's behind you already.
BB
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Lisa, the medical establishment may think it means 'post final chemo' but I'll bet most women incline more to your translation of the acronym.
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Jeanelle,I was told by my GP that Tamoxifen is used as a fertility drug on short term . I also felt pain in both my ovaries the first couple months- The NP ON I was seeing at the time told me that is not where the pain was coming from. My GP told me I needed a regular Oncologist when I told him this.
I would get pain at that time- like constant pain for a few days on both sides which felt like Ovulation and I guess it was.
Now I am feeling lots of pain on both sides that is almost like period cramping which can't be because I do not have a uterus anymore.
I hope you have good luck and things settle down for you.
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Yes wine a bottle of two does sound like a good idea about now.:)0 -
sorry rekidal, I haven't heard of that. But am glad you have finished the re excision. If they had to take some extra tissue, than I hope they also have nice wide margins. I have read about fat grafting on the board for reconstruction if necessary. Good luck.
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Ndgrrl, I'm sorry you have to get another surgery
Glad they found the cause of your pain. I guess one good side is that if they remove your ovaries you have a lower chance of recurrence of the breast cancer. They were talking about removing mine after I got the 19 oncotype score, saying that the arimatose inhibitors work better than tamoxifen and you can take them if you get your ovaries out. I think I'm going to try not to think about breast cancer for a while because I'm getting so depressed. Just like I thought, the seroma is back in full force after the long drive to the doctor on Thursday. At least I'll be living up there starting next week. I feel like I have a fever and flu from the seroma. Take care everyone xx0 -
Oceangirl65
I know how uncomfortable those seromas can be!!! My PC drained mine 2 different times, aspirating several ccs both times. It does get better, but might need some help.
Vickie
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Hi All, It turns out to be not just a seroma but an infection. Do you think this will delay radiation? Luckily my kind surgeon called in the antibiotics tonight at 10:30pm and that we have a 24 hour pharmacy in town.
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Vicks, Yes if the seroma continues I'll get it drained. Not sure if the seroma came first then the infection or if the swelling is just from the infection this time. I wonder if the tattoos caused the infection because I got them two days ago and there is a white circle around one of them.
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I don't need my ovaries anymore. My cancer is almost 100% ER+. Will the docs remove my ovaries if I want them too? It seems like a good option, especially since I'm pre-menopausal.
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Hi Poppy, Yes they'll remove your ovaries, for sure, if you want them to. It does lower your risk. There are consequences though, from the hormones suddenly stopping. My mom did get one removed when she hurt it gardening- I just found that out- so I'm wondering now if that's one of the reasons her breast cancer never recurred. She had breast cancer twenty years ago and has been fine since- i want to be like her! You can wait until you're closer to menopause and get it done then if you want. That is what the doctors said they might want to do with me. I don't know if I'd want more surgery though. I've had plenty of problems in the past month from surgery. Best of luck x
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Ocean, Interesting.... My MO told me chemo would most likely throw me hard into menopause. Now I've been having hot flashes around the clock. I was wondering if she would run tests to determine my hormone levels. What are the consequences I should be concerned with? I really don't want more surgery because the anesthesiologist could not find a mixture that kept me asleep, pain free and not barfing. On my CT there was something about the lining of my uterus... but I can't remember off hand what the issue was. While I don't want osteoporosis, I don't need my uterus or ovaries for babies. I'm much more interested in puppies at this point in my life.
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Poppy, that makes two of us not interested in babies. When my RO told me I could come back in 9 months, I told him I was NOT having a baby and he cracked up.
That's too bad that they haven't found the right anesthetic for you. I believe they may have used propofol for me but I'm not sure. Whatever, I had no side effects at all, which I thought was amazing.
Good luck figuring out what to do. Nothing is ever easy, is it? HUGS!!
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Thanks Peggy! Big hugs to you! The poor doc said he tried everything in his bag of tricks and nothing worked well for me... even Propofol. Hopefully any other surgeries will be shorter and I won't need as much anesthesia.
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That's a bummer, Poppy. Fingers and toes crossed that any surgery is really short! HUGS!
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Since I feel closest to you girls and the ones from the Fall Radiation group, I want to ask for some prayers and good thoughts. I'm having some discharge from my nipple on my lumpy side and it is now red all around the nipple, and my entire breast is sore. I'm hoping it is just an infection of some sort and not something worse. I'm not sure why that would be an infection, I'm 2 months from radiation and 5 months out from surgery. Anyways, I have a call into my MO to see what she thinks.
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Well, I'm 3 weeks out from my lumpectomy (tomorrow), feeling pretty good, though occasionally have some minor pain in my lumpy breast—I think it's nerves healing and that sort of thing. Just enough to remind me things are a little different! The swelling has gone down a lot in the last few days, since my post-op appointment a week ago when my not-very-tactful RO told me it was still swollen and would get smaller and less symmetrical. Well, she was right about that, because now that it's less swollen it kind of looks like a small, deflated balloon from nipple down, with the nipple pointing down even more than before. I'm not loving it but also not freaking out about it; it looks okay in clothes and I know it's early days, with rads still ahead of me, and I have no idea what the final appearance will be. But I've decided to make an appointment with the PS at Hopkins to discuss whether fat grafting might be an option in the future, to fill in the crater on the bottom half and regain a bit of symmetry with my opposite breast; it's been recommended to me (by the nurse/BC survivor/resident expert at Hopkins) that I have this conversation before starting rads, even though I don't think I will be doing anything about it until after treatment and when everything is settled into the way it's going to be, however long that is.
I still haven't resolved the question of tamoxifen, and it's been kind of frustrating and annoying to me. After my BS suggested I should see the medical oncologist to discuss this (told me this last Monday in my post-op), saying because my ER/PR status was 10%, which is a borderline "gray area" for tamoxifen (he would suggest that rather than an AI, he also said)—well, then, a few days later, I finally got a copy of my final post-op pathology report (yes, need to always get the hard copy!), and the surprise was that my ER marker status is actually 1%, not 10%! And the PR, as it was in my needle core biopsy, was 0%, totally negative. I will definitely not take tamoxifen if my percentage is that low; it would be crazy to assume the risks and side effects for a 1% ER marker. I know that my statistical risk of recurrence after surgery + rads is very low—in the neighborhood of 3-5%, and that it would still be very treatable even if it did recur. I couldn't figure out why my BS would have said 10% and set me in motion to see MO (which appointment is currently set for one week from this Thursday, the same week I'm to have my initial rads set-up appointment on Monday). My husband and I could only guess that my BS simply misread the report on his computer as we talked—he was very far behind in his appointments that morning, so was having a bad day, it could happen.) Long story short, I decided to email the nurse navigator (not the same person as the nurse "expert" above) to ask what I should do about this discrepancy, she said she'd look into it (and as it turns out, forwarded my email to the BS and pathologist at the same time), but at the same time NN suggested I should see the MO anyway to "discuss long-term systemic therapy that may be indicated." Well, I have/had DCIS, no invasive cancer, my right breast was totally normal with no calcifications or other concerns in my mammo, I got clean margins in the lumpectomy, and I'm all in (reluctantly) for the 4-wk course of rads to start in about a month. I'm pretty sure that if my hormone markers do not indicate that hormone-blocking therapy would be of benefit, I don't need any other long-term therapy at this point! I have, like most of you, been obsessively reading up on my condition ever since dx, so I do know a thing or two, and I know I shouldn't need chemo for a pre-invasive DCIS that has not become invasive as of yet.
I'd decided I didn't want to waste another half day, driving 40 minutes each way, to see a medical oncologist if I already know I'm not going to take tamoxifen, nor is it even appropriate for me to take with a 1% ER status. Decided I would email my BS directly (that's what NN suggested I do), but since she'd forwarded my letter to him, he actually emailed me over the weekend before I emailed him. He said he was "guessing" that my final report hadn't been available to him when I saw him last Monday, that he may have based his suggestion about the tamoxifen on the pathology from my core needle biopsy. That could be, since the final report didn't show up in the "my chart" thing until about Friday of last week. (I had called his office the day after my post-op appt. to get a hard copy, and it was supposed to be mailed to me, but it hasn't shown up yet.) But even if that's the case, the ER marker from my core needle biopsy was 5% (I did get that hard copy!), read as low positive, not 10%, and the PR was 0% then, too. BS had told me that anything under 10% would probably not warrant tamoxifen. Frustrated, I emailed him back and said I would certainly keep the appointment with MO if he felt I should pursue that avenue, but I was confused about why he was saying this and just wanted to understand. Yesterday he emailed back and said, "Actually, let me go through all your records again tomorrow and let you know then." So now I await his response. I felt much better after he said this; before I felt kind of like he was just blowing me off, not really paying attention to my report or what I was asking, which very much disappointed me, so I'm glad he thought better of that and is doing the right thing. It's not that it would kill me to keep the MO appointment, but it's more time devoted to this time-sucking disease, and a copay I probably don't need. And I want to be listened to, actually, and participate in my own treatment plan! So that's my story; how's everyone doing?
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Very sorry to hear this, jeanelle, and it sounds scary. I'm no doctor, but it does sound like infection symptoms to me. Hope you hear something very soon.
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jeanelle...good luck getting sorted out. That doesn't soung good.your BS may want to see you too. Good luck. Good that you reached out. It's monday, so you'll def be seen and won't have to wait over the weekend.
Kay fry, yes you should know what your bs was talking about. One more appt may seem like too much, but I'd rather be kicking myself for wasting my time than wondering what would have been said, or recommended. Gather up all those last questions and get answers, and be done. Maybe celebrate with a dinner out after. Good luck to you too. Hugs. What a long road this is.
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My MO is sending me to get a mammogram and an ultrasound today. I just have to go to one of the other breast centers in town (we actually have at least 3) as the one I normally go to doesn't have a doctor on staff today.
My BS basically signed off on my case as soon as I had the follow-up for the surgery and turned me over to my MO. She does all my follow-up from here out unless I would need further surgery.
Gotta say it is bringing back all sorts of bad memories. Trying to think positive about it all and hoping it is just an infection.
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Thanks, Gatomal, and just to be clear: I will absolutely follow my BS's recommendations, as long as I know they're based on the actual known facts of my case, including my final pathology report. He's the doctor and he knows his stuff, but I've felt on this tamoxifen thing, something has been lost in translation. Of course, I'm willing to invest the time in one more appointment if it's time spent on appropriate questions of my follow-up treatment, so I'm waiting to see what BS says today after reviewing all my records, as he emailed me yesterday he's going to do. I'm not really worried about taking tamoxifen, because I don't think I'll be doing it (but I WOULD absolutely do it if I were given good reasons to do so!). Based on what BS tells me after review, I'll either keep the MO appointment or not.
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Kay, just wondering why you think that you would be given tamoxifen rather than an AI? While the path reports and Oncotype refer to tamoxifen, women of a certain age (like me) are usually given AIs.
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PontiacPeggy, I believe Tamoxifen is usually give to women with DCIS (no invasive component) no matter what their age if they are strongly ER positive. Age plays a bigger role when it is invasive (I don't know why, but that seems to be the way it is).0 -
Peggy, the reason I think it is because that's what my BS told me. He said it's not the case that women our age are usually given AIs, actually. I told him I understood that to be the case, and he said no. So there must be a difference among doctors on this? I did a little research on it after that, and what I found that using AIs for DCIS is actually an off-label use, that tamoxifen is prescribed regardless of age (if indicated due to ER/Pr+). Possibly the difference is partly because of your IDC? The potential SEs of the two are different, too, as I'm sure you know. Happily, since you haven't been bothered by any of those SE's it doesn't matter!
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Bookwoman and Kay, I'm betting you're right that since I have IDC I'm getting AIs. I'm very lucky I haven't experienced any SEs and hope it stays that way since I think my MO wants me on armidex for 10 years, not just 5. Fine by me. I do know many women of my age do take tamoxifen, for many reasons. But it is true that our MOs sure do have different perspectives on things. I'm really quite surprised. I'd have thought there'd be more of a consensus. If you trust your MO, that's what matters!
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Gosh, Peggy, 10 years seems like a long time. Wonder why so long? But good that you have no trouble with it. Since I don't yet "have" an MO, and not sure if I will, I guess I'll have to wait and see if I trust him! (I do know he's a him, if I wind up keeping that appointment).
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Kay, the latest research seems to support 10 years on AIs. I'm totally onboard with it. Rather do that than have BC come back. You are definitely in a different place being ER- I hope you find the onc you need and trust!
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Jenelle, I'm glad you've got an appt. for today - you must be pretty concerned. I hope it's an infection that is easily and quickly brought under control.
Kay, it sure does sound like something's been garbled. It will be interesting to see how it all shakes out, that's for sure.
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Kayfry--Here's a link to an article reviewing research at both Mem Sloan Kettering and U of Michigan that suggests an answer to your question about why the 10 years now, with the change from one anti-hormonal type to the other:
http://www.biosciencetechnology.com/articles/2014/...
This research supports my husband's idea that cancer cells mutate and grow resistant, much like bacteria do when they are fed an antibiotic too long. (He did research in the bio/genomic area before retiring and keeps up with it now.) So if the cancer cells start resisting tam or AI, then a change is needed, just as for antibiotic resistance--hence the switch.
Just another tidbit for your files before you see the MO if you do.
Good catch on your path report "variances"--we must be so vigilant to protect ourselves. A friend's daughter (46) had a hyst/ooph after a BMX, chemo, and rads to take care of the hormones still in her body, and was beside herself when an RN came to give her an HRT patch postop! The RN's answer was, "But we always give estrogen patches post-op after a hysterectomy!" to which Kim said, "Not to me, you don't!" Trudi
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