Lumpectomy Lounge....let's talk!
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KayFry, It is interesting how we wind up where we are. SD son and I rarely text beyond immediate needs. We both prefer IM'ing. And of course, we started long before texting was much of an option. The Navy took him to Long Beach and his wife, from NYC, said she was not going to leave southern California. Being a wise hubby, that's where they've stayed! Spokane son and wife first lived in NW Colorado where he was teaching HS math. That turned out to be disappointing though he is a fantastic teacher. They moved to Spokane to be near her brother and then her parents (she's from Michigan). I'm not sure I'd have been brave like Shaz's parents to pick up and move half a world away. That takes guts!
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It occurs to me to say that I hope no one here is bothered by the fact that I have gone seriously off-topic in some of my recent posts. I have, but I just feel that it's so good to remind ourselves that we all have lives apart from BC, and that we won't always have to spend as much time as we are now thinking about BC! I have been enjoying getting to "know" you ladies, and getting a sense of how this unwelcome diagnosis we share fits into the other corners of our lives. That said, I don't want to bore people with things that aren't relevant to the reason we've all come here, so I'll try not to go crazy with it :-)
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KayFry, I agree with you. it IS nice to "know" our friends here. And sharing this personal information does not detract from our main goal of helping each other discover the best way to cope with this rotten diagnosis.
HUGS!
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Hi Peggy, I can tell you're a very caring person and I think the decision you made is really good. Breast cancer does make us realize that we also need to think about ourselves. I realized this too. I think the stress of caring for others can really undermine our immune systems. We also matter!
hotrodmommy, I saw you are taking tamoxifen before radiation. I was wondering about that. I want to start it asap but they said to wait until after radiation. I also want to wait as long as I can to start radiation because I want to heal more- I saw you got to wait two months. That's pretty good. I'd like to be able to wait that long but I think they want to start me as soon as the oncotype test comes back.
Everyone, sports bras are really helping me! I think skipping on wearing a bra (only wearing a camisole) the first two weeks after surgery was way too painful. All my bras rubbed on the incision but a sports bra works great. It has made a difference to be able to move around and not have the pain from my breast moving. Thanks for encouraging me about this!
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OceanGirl, thank you for the kind words. They really help!
My RO did not want me to start radiation until I was well healed. So about 6 weeks post-Lx. That worked well for me. And I got the Oncotype test results the Friday before I started the rads on Tuesday. Worked out nicely. I'm sure if my score had been higher, there would have been no radiation at that time.
My MO wanted me to start Arimidex the day after I finished my rads, which I did.
Apparently my team believes in one thing at a time.
HUGS!!!
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had fun last night at the party, most folks were quite surprised to see me, but I was home early so as to not tire myself out. I took the bandage off, she looked so sad at first, and my nipple now points left, and she has a big indent, but overall, she looks good. No bruising and no "smurf boobie" ! I too am going to start yoga. It's offered at my job, on Tuesday's, but this week we're expected to get 1-2 feet of snow! So I think I'll just stay cuddled up on the couch with the dog. Only disappointment is I'll have to rescheduled my appointment with my BS and the findings in thepath report.
Peggy, where do your sons live? How long will you visit them? Retirement, still seems so far away. I hope to travel, my kids have been to many more places then I. My baby, who's 24, visited Australia for 12 weeks, by herself! I was a nervous wreck, but she a grand time and hopes to go back. She's a horse woman, and spent a lot of time at horse farms.
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BikerBabe, So glad you had a good time last night. Your poor girl will change looks and settle into her final shape eventually. Too bad that you'll have to wait for your path report. One would hope your BS would call you with them.
My oldest son lives in San Diego and has since he left the Navy 20 years ago. My youngest son lives in Spokane. I'll probably be with each of them for about 5 days. I really don't want to be gone from DH for much longer than that nor the cat and dog - that's a very long time in their lives (I'll have to board them).
If your daughter goes back to Australia, be sure to have her look up Shaz! They could talk horse
These connections really do work. I had an Aussie friend of long standing and my girlfriend from Wales (now Portugal) her daughter was going to Australia and I put them in touch and they did get together. I was so pleased! I'll let you know how my yoga goes tomorrow night. I should think I'll do well (but no standing on my head - I can do it, but I don't like getting dizzy).
Hugs!
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Bikerbabe - sounds like you've got the hang of pacing yourself; well done. That can be a tough lesson to master. I hope you don't have to reschedule that appt. - could you possible have a phone consult if needed? It's not the same but better than waiting, perhaps. Lucky you to have yoga at work!
Oceangirl - I'm glad that wearing the sports bra has made such a huge difference for you! Maybe now that you're on top of the pain the healing will speed up. Let's hope.
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Hi Oceangirl... My Mo told me to start taking tamoxifen on Dec 4th while I waited for my oncotype results. (I think he knew I was going to get a low score) My bad I didn't take it, I was scared, I was having such a hard time healing from my lumpectomy and had lost a lot of weight which was not a good thing for me, and I wanted to get my body healthy if I needed to do chemo, and I didn't know what SE I would have. The only reason that it took so long for me to start radiation is because the nurse some how didn't send the request for the oncotype test till I figured it out on my own. So I waited 42 days to get it back. So I am so ready to get moving on radiation. My Mo said it was ok to take the tamoxifen while I'm doing radiation, so I started a week ago and so far no SE....I'm waiting for them to come. I'm not sure why my MO says it ok to take it and your says no, I would push harder to start the tamoxifen if you really want to. Good luck!!!!
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Oceangirl, My MO has me waiting until rads are done to start Tamoxifen. She told me it was so that they would know which treatment (rads or tamox) were causing any side effects I experienced.
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I'm sorry to be so dense, but would you guys explain to me again about oncotype? Because so far, no one on my medical team has ever mentioned it. I know we talked about it here, but I've lost that thread now. What is good, a low score or a high score? And what does it measure, exactly? I wonder if I will learn what mine is at my follow-up with BS and RO tomorrow morning (assuming I manage to make it to the appointments given the storm(s) about to move in to our area and kind of hang around through possibly Tuesday. I'm pretty determined I'm having those appointments, though!) But it seems as if you're saying the oncotype is a whole separate test, apart from pathology? So far, I only know what someone told me over the phone on Tuesday when she called in place of my BS, who was out of town. That was size of tumor, DCIS grade 2 (biopsy had called it grade 3, so this is an improvement!), and margins, no invasive cancer found. That's it. No one said anything about oncotype, or hormone receptors, and no one has ever mentioned HER2 to me so far. It seems that oncotype is something I should be finding out, right? What is it that depends on oncotype score, in terms of the treatment plan?
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Bikerbabe, it sounds as if you're doing great! Glad you enjoyed the party. And now, both Australia and horses pop up in this conversation again! This is a little odd but so cool!
I also thought the poor girl looked pretty sad when I first took the bandage off, and I definitely do have a dent and a slight directional change of nipple (though that seems to be straightening out a little bit now). But overall, I guess I've gotten used to it and it's not so bad. I'm sure there will be settling and remodeling, as Peggy says, and also rads may or may not change anything. But it doesn't seem to be anything I won't be able to deal with so far. Sounds like things are looking good for you, too.
I'm starting to wonder if the oncotype was requested for me, and not, why not? I hope to get many answers to many things tomorrow.
Bikerbabe, you're getting the huge pile of snow that apparently is going to just skirt past us, giving us maybe up to 6 inches total over the next couple of days. Stay warm and cozy!
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KayFry, here's the article on BCO Oncotype Test. Yes, the oncotype is a genomic test and is sent off to California (I think). It's expensive - about $5000 I heard - but insurance usually covers it. The oncotype results usually come in well after the path report. You want a LOW oncotype score. You want a negative HER2. The higher the oncotype score, the more likely that chemo will be part of your treatment plan. I would be surprised if you learned of your oncotype score this week (but it could happen). Mine took 6 weeks, mostly because I requested it though no one thought I would need chemo. It was reassuring to know that chemo really wasn't needed. This help?
HotRodMommy, no one gave me a reason why the wait to start my anastrozole (Arimidex). But I thought it made sense to do one thing at a time and it never occurred to me to worry about side effects of either.
HUGS!!
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Thanks, Peggy, I will read the article next. I can kind of envision that I might fall into the same situation as you did, that perhaps the oncotype might not be thought needed because no one would think I need chemo? At least, to this point everyone involved has told me I don't need chemo, and the results of the pathology that I know so far (no invasive cancer, DCIS grade 2, clean margins) would also seem to be pointing that way, I think(?) Also, no one to this point has said anything about HER2. From my stereotactic biopsy I got ER- and PR "weak" positive. On that basis, the original RO up here in PA who did that biopsy and gave me the results said that there was no reason for me to take tamoxifen. But since the DCIS grade changed in the final pathology, I guess other things could possibly change too?? My tumor was certainly larger than the earlier estimate, I think because of the second small area of DCIS that apparently was only found by Johns Hopkins when they got their own diagnostic mammogram. I will definitely ask about all of these things tomorrow, if they aren't included in my report. So your treatment (rads, I mean) wouldn't have been started before your oncotype score was available? Of course, until tomorrow, I can't even say for sure whether I'm looking at re-excision for the one close margin, but I think it's most likely I'm not. I will probably have some trouble sleeping tonight . . .
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Hi All, You guys are so great to talk to!
I wanted to ask- how do the appointments go for the radiation? Right now I'm just waiting for oncotype, then I'm supposed to see the radiation oncologist. I don't want to drive up for the appointment for nothing because it's so far! How are the appointments laid out- like would that appointment be for the tattoos and measurements? And then how many days after that would be the first day of treatment? I'm going to be staying at the house at the hospital for the treatment so I'm wondering if I can just go up there starting at the next appointment and not have to come back til the end of treatment. Thanks for telling me how it goes!
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Peggy, six weeks does sound about right. I think I'd like to wait that long.
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ndgrrl,
I was reading how four of you got breast cancer around the same time. Same with my family, except it was two of us, my sister and I both got it last year! It was so weird. My poor parents- all that bad news in one year. My mom also had a recurrence scare in the same year though thank goodness all is ok with that. Despite it all, we are all doing quite well considering. Both of us are enjoying life and just dealing with it.
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KayFry, as I recall I rather insisted on the oncotype. I wanted to be sure that I was doing everything to kill the damn BC even if it meant chemo (which I was sure I'd need). Kay, if an anti-hormonal drug is called for, you probably would not have tamoxifen since you are post-menopausal (I assume). It would be an AI. But they are not used for ER- cancers as I understand it. You need those receptors for AIs to work. And yes, the receptor status can change especially when you have two different tumor areas. The reason for the wait for the oncotype score is that if chemo is called for they want to do it before radiation.
OceanGirl, my first visit to the RO they did everything - measured, x-rayed, scanned, and then tattooed me. So only one visit prior to actual radiation was necessary. They did all this before my oncotype was available but they scheduled my first rad treatment anyway and the score was in right before that day. Also saw the MO that day - so I was going to be treated one way or another. It should be possible for you to do everything in one stay. I can't see why not once you get your oncotype. Request it!!! I thought 6 weeks was good, too.
HUGS and good reports!!!
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Well, this is interesting. I continue to learn so much. I read the article here on the oncotype test, and a couple of things struck me that may have something to do with why no one had mentioned it to me. One is that my original biopsy showed my DCIS to be ER- and PR "weak positive" (which is maybe only slightly different than negative??), whereas the test is most useful to determine need for chemo with ER+ tumors. It seems that the oncotype test is mostly used for a couple of situations—one, where the cancer is ER and PR positive, which mine evidently isn't. And two, where there's invasive cancer as part of the picture, which apparently, from what I know so far, there isn't currently with mine. The other situation is specifically for DCIS, but this oncotype test is very new and not yet fully tested or validated, I gathered. The reason for running the test for pure DCIS, though, would be to determine which patients would benefit from radiation, and which ones can safely skip it. My understanding from my own health team at Hopkins all along has been that if you opt for lumpectomy for DCIS, you're also signing on for rads, no questions asked. And given that my original biopsy showed grade 3 with necrosis, I pretty much know that I have to do rads. Especially with the one close margin—if I can avoid further surgery, I know I have to do rads to make sure there are no stragglers left in there. Also, the larger tumor size of 2.4 cm would have to be a concern. So radiation it is, I have no doubt.
Then I went looking for more from my surgeon at Hopkins, Dr. David Euhus, specifically, because I remembered reading somewhere when I researched him early on that he had been involved in some kind of work in genomic testing for breast cancer. I found lots of articles and things I'd never seen before when I googled specifically his name and oncotype dx, including a very informative powerpoint he authored about DCIS in 2012 (the guy is kind of a BS rock star, I think. I think he's amazing, just sorry that I never got to talk to him after my Lx, so tomorrow morning's appointment is really important to me. Anyway, in this PP is a page in which he says he doesn't use the oncotype test, and gives his reasons (he thinks even in cases where the test shows low risk of recurrence, the risk is still "too high" in his estimation). He also explains a lot of other stuff, including why he doesn't routinely do SNB for pure DCIS, why he doesn't generally order MRI for what he considers a straight-forward case of DCIS, etc.
The upshot is that I feel at least better prepared for my appointment tomorrow. I will certainly hope to hear something about my HER2 status. Thanks for all this, Peggy! And to you other ladies for bringing up oncotype. This group is amazing.
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KayFry--in your stats, you wrote "ER-" which may explain why Oncotype testing didn't get mentioned. The literature says it is for estrogen-receptor positive folks, and this notation says you are negative--unless that's a typo. In any event, in these parts of PA, the Oncotype test is ordered by the med. oncologist, not the surgeon, but it is carried out on tissue from your excised tumor on file in your hospital path lab. It took 2 weeks for my report to get to the California lab and come back to the MO--contrary to the images of it presented on tv shows like CSI, genomic testing takes time, (Since much of my husband's research was, and still is in retirement, in the biomolecular area, he gets so annoyed at the misleading info transmitted when the tv lab techs come back with genetic testing results in the wink of an eye!) So if the MO orders a test for you, just relax and forget about it for a fortnight!
Hope you get less snow tomorrow than predicted and can make it to your appointments. (Where is Stewardstown, anyway?) Here in Chester County they're predicting 6 to 12 inches, and I am taking a divorced friend, 3 weeks after her lumpectomy, to her MO appointment tomorrow too--we hope! At any rate, good luck with the weather tomorrow and also with your appointments. Trudi
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Peggy, I posted above before I saw this response from you. Right, unless my hormone receptor status changes with this final report (and the anonymous person who called me with my results earlier in the week said nothing about that), I understand that I would not be a candidate for that kind of therapy. And yes, I'm way post-menopausal, so I know I wouldn't be taking tamoxifen in any case. It may be that because they found nothing invasive in my pathology, that chemo would not be on the table, so no need for oncotype test. I'm sure that if there had been any invasive component at all, I would be going back for re-excision, probably SNB, and maybe a consideration of chemo. So I'm thinking that as obsessive as I am, this is about as far as I can go before actually seeing Dr. Euhus and going over everything in greater detail.
I had an initial visit with my RO on the same day I had my initial visit with BS, and now I'm scheduled to see RO again after my surgeon appointment tomorrow. I wonder, then, if all this x-raying, measuring, scanning, and tattooing is going to happen tomorrow? I'm not sure. I was told on the initial visit that I had to have one set-up appointment at the Hopkins main hospital for rads, and thought that was when that stuff would happen. Tomorrow is not there, so I'm not sure what will be. Well, I guess I'll find out soon enough. Thanks again for helping me prepare.
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KayFry, amazing what you find when you get headed in the right direction, isn't it?
Good luck getting to appointments tomorrow!!!!
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Kay, it is better to know all the things that might be brought up in your visit and be prepared (like getting scanned and tatted) than be surprised! I'm in your pocket!
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Trudi, the ER- in my stats is not a typo, that's what came back from my original biopsy that confirmed DCIS. Also, interestingly, so far I have not been introduced to any MO on my treatment team. I wonder if I have one? I have my BS and the RO team, whom I met on my first visit to the Johns Hopkins Breast Center. Should I ask about a medical oncologist, do you think? (By the way, I had to laugh at your description of how annoyed your husband gets with TV medicine
My husband is recently retired from the practice of medicine too, for most of his career, after a residency in family practice, as an ER doc, and you ought to hear his response to most of the TV shows depicting emergency medicine. Or, on second thought, you wouldn't want to hear that, hahaha.) We're not that far from you in Chester County—we're south of York, in very southern York County, due north of Baltimore. So far it's just raining lightly here. This forecast has been giving me whiplash today, it keeps changing so much. The last I looked, snow totals are supposed to be higher in Philly than here, and higher still in NY (daughter and her family live in Brooklyn, too bad for them. Or maybe fun for their little boy!), and crazy high up in parts of New England. I think we're looking at some rain turning to snow overnight and tomorrow, but maybe only a few inches (up to 6, maybe, total). More on Tuesday! I'm hoping to make my 10:30 appointment tomorrow, for sure, but I'll probably have to allow lots of time to get there. Good luck getting your friend to hers! Be safe.
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Ah, wait. Maybe a medical oncologist only comes into the picture if one needs chemo or hormone receptor-based therapy? I.e., "medicine." Maybe that's why "my" MO has been MIA up to this point! Sheesh. This is all a little mind-boggling at times, ladies.
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Kay, that's what I'd think about the MO. Too much crap hitting the brain in such a short time creates overload.
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kayfry...would love to see the powerpoint presentation by Dr. Euhus. I googled him but couldn't located the PP. Do you think you can post the link?
Has your RO talked about internal rads? I had internal rads (twice a week for 5 days). Doesn't seem to be too many people on this board that went that route. Just wondering if a large center like John Hopkins offers it.
Good luck at your appt. tomorrow. I know all this info can be overwhelming.
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I know, Peggy. Time. To. Stop. Overload. But in a good way.
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Kay, read a good book and relax. Time to turn the brain off
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Nash54, I absolutely will. I had thought to ask if anyone is interested. I just have to figure out how to post a link to a powerpoint, though I don't know why that should be hard. Dr. Euhus drew little pictures for me the first time I saw him; he is good at giving clear explanations, I think.
No, I have heard nothing from the Hopkins folks about internal radiation, though I've seen it mentioned here a couple of times. Possibly he mentioned it in passing . . . I do know that I'm able to get the accelerated external radiation, which cuts the duration of treatment about in half. Getting done in 5 days certainly does sound good!
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