Lumpectomy Lounge....let's talk!
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IHGJAnn49 - thanks for your reply my new diagnosis twin! So I had to go look up information about Onco scores. Being in the middle, it sounds like you have a much tougher decision in trying to determine if you should do chemo? How do they do the Onco test?
I was going to try and do brachytherapy (internal radiation with the seeds) versus external beam radiation. The surgeon put the Savi device in my tumor cavity during my surgery. Unfortunately, after the Path report came back, I wasn't a candidate because of the LVI and there was not enough clearance between the device and my skin. So, the radiologist removed the Savi spacer on Wednesday. Good luck with your MO tomorrow. When I see my surgeon later this week, she will probably set up an appointment with a MO.
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Hey, Sunrise, very familiar with Peoria! Just south of of you! Most of those questions will be addressed by your BS on margins, MO on chemo, radiologists on radiation. I don't think LVI or lobular features of IDC automatically qualify you for chemo. Your nodes are clear -yay. Margins that I have read about that are good are 2mm which is a fraction of a centimeter. Are you working through a University of Illinois doctor? Very involved with Bradley U!
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Sunrise, The Oncotype DX is taken from your labwork, it took about a week to get it, and i will be asking my MO about a mammaprint or progina test too, they help determine a little more which way to go..
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ILsunrise my initial path from my biopsy also said IDC with lobular features. I just had my lumpectomy on Friday, so I don't have the next path report back yet or been told if any spread was found, but even with my initial path saying IDC with lobular, I was told it would lumpectomy with radiation, no chemo (unless we have other findings). So I wouldn't assume you will need chemo yet!
Had some pain today, not too bad. Took off the dressings and showered...yikes, the bruising is ugly! I didn't realize how bad it was until today. The back of my arm is still numb. Hoping that goes away soon.
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Michelle_in_cornland - Thanks for the info. It was a beautiful day in Central Illinois today! My surgeon is with Peoria Surgical Group - Dr. Mammolito. My husband went to Bradley.
Leslie2016 - Thanks for the info. Glad to hear your pain isn't too bad. I did notice bruising from the injections sites for the dye used in finding the sentinel nodes. I don't have all my dressings off yet so not sure about other brusing. I had a Savi spacer in that was removed since it turned out I couldn't have internal radiation. So I still have the dressing over that area. The itching from the steri strips is driving me crazy though. My pain hasn't been too bad so far.
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IHGJAnn49 - thanks for the information about the Oncotype DX test. Sounds like a question I need to ask a MO once I have an appointment scheduled. How soon after surgery did you see a MO?
Michelle_in_cornland - if you are just south of Peoria, do you have your procedures done here? If so, who is your MO? I have a few names my surgeon gave me and I need to let her know who I want to see.
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I saw my MO 8 days post-op. My surgical path report came back 5 days post-op, so I asked her about doing OncotypeDX and she said she had already sent a sample off for it that morning. I had been told by my BS’ NP pre-op that because of its cost ($4800) it isn’t routinely done—for node-negative/clear-margin/no LVI/ER+/PR+/HER2- grade 1 or 2 tumors under a cm., it’s highly unlikely that chemo would be indicated. OTOH, for grade 2 or 3 tumors with >3 positive nodes, LVI, >2 cm, or (especially) PR- or HER2+, chemo is a given. The test is only ordered for path results in a “gray area,” in my case because my tumor was 1.3 cm. Even so, my MO said she was “90% sure” I wouldn’t need chemo. She was right.
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Sunrise, I have all my work done in Springfield. Being a medical school and research center, there are alot of good doctors. There is a new one out of fellowship at Springfield clinic. The MO that I saw is good, but will be retiring. The MO I will see a couple times per year, the BS I will see more. My BS is the 2014 fellow from the University of Southern California.
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Hi all! Welcome new members. Hang in there, once you have a plan things get better. Waiting was the hardest part other than the shock of it all. I'm almost 2 weeks post radiation and things are healing nicely. Skin is a little darker and a little dry. Nipple and arrolea swelling is gone. Incision around arreola is becoming more faint. Breast swelling gone. I lost a little fullness from lx and rads. Noticeable when looking at both in mirror but I'd have to point it out to you. Nerve endings fire off every once in a while but no pain otherwise. Still wearing non wire bras. Doc said wait a few months. Started Tamoxifen yesterday. Didn't think I was going to take it but after much consideration and consulting my primary doc, whom I love!, I decided I really needed to give it a shot. So far so good. Not sure how far out SEs would take to show up or whether they'd be instant? Anyway staying really busy with work, caregiving and being mom!
Hope everyone has a nice week. Hugs to all.
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Sunrise, I saw my MO about two weeks after my surgery
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Lorri, sorry for a late response (I've been traveling), but I wanted to chime in on losing your nipple. I had a lx with nipple removal. In my case it was IDC, not Paget's, but the tumor was right below the nipple, hence it had to go to get clean margins. It makes very little difference in shape of the breast (I am a 40D). Basically, where the nipple was there is now a round circle scar. It isn't visible at all under clothing.
It doesn't bother me, nor was it hard to look at the first time. At first, I did sometimes feel a bit sad that the nipple-less side is the same side that is closest to my husband when we are in bed (it was my right breast and I always sleep to DH's left, and well, reaching for that breast and nipple was his first move when...ok, you get the point...). When I finally got up the nerve to tell him that, he suggested we change sides of the bed. So sweet of him to come up with such a practical solution! Thought about it, but honestly, I decided that 16 years of married habit was too hard to break, and in turn that realization made my understand that if I didn't care about it enough to change sides of the bed, it really didn't matter that much to me!
That said, I've heard that the tattoo'd nipples are fabulous, and that is always an option if you decide you want one. It just isn't that big of a deal to me. Consider the tattoo if your mileage varies, as we are all different.
It will be ok. You can do this. Sending hugs!
xox
Octogirl
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Jill!! You look lovely. Congratulations on moving past the daily cancer grind. Welcome Sunrise, I had two positive nodes plus extensive lvi and with a low oncotype Dx of 13 no chemo.
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ILSunrise, a lot of women here have had to have new surgery to clear close margins. I had surgery nearly three weeks ago, only a millimeter clear on two margins so not so great.
The surgery was fine, easier than the first time and healed much faster this time round. It's not what you want to hear when you're not healed from the first one and you don't want to go back to the beginning again. But I was back to normal really quickly the second time around. The only thing is sweating on the results, I was worried it still wouldn't be clear. But it was, so now we can get back on schedule.
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Thank you for taking the time to reply Octgirl I feel a bit better now its new diagnosis and scary I know I really should be worrying about the results and beyond but I don't epwant to deal with that quiet yet. This site is brilliant so much help advise and support
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Lorri, I just noticed you're in Ireland, great to see someone from this side of the Atlantic, and on the same time zone!
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Good morning, I will be getting my MRI results tomorrow. A little nervous. Hoping there are no other areas of concern and we can move on to discuss and book surgery. Not sure if I am a stage 2A or 2B yet since my nodes appear and feel fine. At what point did any of you decide on chemo and what were the reasons you didn't not have to do chemo? My Oncologist has already talked about it with me so it seems likely but i would eel a lot of relief if i didn't need it!
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Stacey, is your MO running the Oncotype test on you? It is a bit unusual to be discussing Chemo prior to surgery. In Canada it might be different than in the US. In this country, we get a mammogram, then ultrasound and a biopsy if there is something suspicious. You are Her2 neg which makes things a little simpler. There are girls on her from Canada. You have some really good doctors in Toronto.
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Hi Stacey,
I am in Toronto as well. I did chemotherapy because I had one affected lymph node. Ideally I would've done an oncotype test, since the spot in the lymph node was very small, however I did not qualify for oncotype testing and agreed with my oncologist that I was better off doing chemotherapy than not. I was told that had it not been for the lymph node, chemotherapy would not have been recommended (however if I qualified for the oncotype test, I definitely would've wanted to do it before deciding).
Ps The decision about chemo was made after surgery. They may have some idea beforehand about whether or not you will be likely to do chemo, but I highly doubt you will get a definitive answer ( about whether or not it is recommended, whether or not you do it is up to you of course) until after surgery. I was told before surgery that I would likely only need radiation, however that changed because of the lymph node ( which did not surprise me because from the first ultrasound the node looked a bit swollen, everybody told me that could be "anything, but I suspected).
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Molly50 - thanks for more information that LVI does not necessarily seem to point to chemo. It sounds like the Onco test is kind of the deciding factor based upon what you and everyone else has told me so far.
Dizzybee -Thanks for the information about your second surgery. I'm relieved to hear it wasn't as bad as the first time around. I can certainly understand your nervousness while waiting on the second path results. I've found even with my short experience with BC, each time I have to wait for results it seems to take longer and I am more anxious each time.
IHGJAnn49 - It's been one week today since my first surgery. Thanks for giving me an idea of when you saw your MO. I think I'll call my surgeons office or my nurse navigator and tell them which MO I want to see so that maybe that appointment can get scheduled.
How does everyone enter the additional information that shows up in your posts in the area where your DX, surgery, HT, RADs, etc displays? I see some people put in inspirational thoughts or more information about their situation such as age diagnosed.
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Thank you Michelle and Loves to fly. I will definitely ask about the oncotype test. My understanding is that final decisions will be made after surgery but all discussions to date discuss chemo as if it is a given. The only mention wasn't the potential of a milder chemo. Once I know more I will be asking more!
Loves to fly it is nice to meet a fellow Torontonian! I'm at PMH so have a lot of trust in the recos from the team. The waiting with limited answers is so hard. Patience is not my strongest
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Any Ladislav who are grade 3?
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ILSunrise, your dx is very similar to mine. Everyone can still be different though. Did your BS order the Oncotype test to check for risk of recurrence. It's frequently done on small IDC. Breast Cancer.org has a great guide that explains all about the pathology report and I recommend you read it before your appointment next week. It can be found at : http://www.breastcancer.org/search?utf8=✓&term=Guide+to+pathology+report&commit=s . My pathology also found some DCIS that was grade 3 but my BS said that the primary tumor IDC is the main one they go by. I was told I'd have the lx, plus radiation. My onco score came back intermediate for recurrence so they did a 3rd test (Prosigna similar to the Mammoprint) and that test came back that I was high risk for recurrence so chemo was highly recommended. My genetic tests were negative for mutations.
Today, I'm having my last chemo, and while it hasn't been any fun, it wasn't as bad as I expected and I felt it was worth any risks to avoid a recurrence in 5-10 years. Everyone has to weigh their options and make their own decisions with their family and MO, and then don't look back. I'll be starting radiation in a few weeks. Good luck with your research and appts. Feel free to PM me, and I also recommend coming to the Lumpectomy Lounge for additional support. The women here are great. Dara
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Dara congrats on your last chemo!
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ILSunrise, this is where you can make any or all parts of your PROFILE public Settings and also create a signature. You can update your profile at anytime. It's all very confusing.
LG and LTF you both are looking great!
Dara, hooray for last chemo!! Bet it sounds wonderful!
Leslie, I hate to throw cold water on your hopes for the underarm numbness going away quickly, but it often doesn't. Many of us find this is the most annoying part of our LXs. I finally got virtually full feeling back about 13 months after my surgery. Some ladies get it sooner. But I still find that if I wear tops with a tight armhole that site reminds me it is there. It doesn't exactly hurt, it's just a pain in the butt. Those nerves get all messed up with the node removal. Some ladies get "zapping" pains shooting through the area. Quite normal. Make sure you watch what bra you wear. Some may rub that spot.
Finally some sunshine here today - lots of rain, very tired of it. Allergies have been a mess. So not doing much.
HUGS!!!
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PontiacPeggy - Thanks for telling me how to update my settings for the signature. I just did. I agree it's very confusing.
DaraB - Congratulations on your last chemo treatment! That is fantastic news!! I don't know if my BS ordered the Oncotype test but I did ask her about it at one of my pre-op appoinments. It's certainly a question I'm going to ask her this Thursday at my first post-op appointment.
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ILSunrise, I also requested an Oncotype test though the BS and RO thought it wouldn't change my treatment. For some reason my MO thought I should have chemo even after the score came back at 13. I did not have chemo. Glad that you found the right spot for getting your signature included.
HUGS!
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Twinsmawmaw - I am grade 3, and triple positive due to my Her2.
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So great to see LG and LTF after such a long time!! You both look so happy in your photos. Here's a photo of me with my older daughter at the pumpkin patch this lovely Thanksgiving weekend - my younger daughter had been putting us through the gears on the porch of the little shed, making us pose this way and that for photos, and we were just cracking up as we walked away.
Leslie, I wanted to chime in on the back-of-arm numbness - I'm just going into my 8th month since surgery and I've just started to realize that the thick numbness on the back of my arm has really begun to disappear - it used to feel like a fat lip after dental freezing, but now I can feel the sensation when I drag my fingernail along the skin - same for the lymph node removal area - still a little bit numb. It took a LONG time to feel the razor on my underarm when shaving (I was always VERY careful and watching what I was doing). I also haven't had those nerve zaps that Peggy referred to for quite a while now. It's so wonderful to say that I feel pretty much back to normal. I still feel a slight bit of discomfort when I sleep on my right side - a bit of a pinched feeling, I guess, again in the lymph node area. That area was also a bit itchy the other day, just for a few hours... weird.
I also had some LVI and my Oncotype score ended up being 21 (my MO just asked if I'd like the test, although I had been prepared to request it when I got that score). After consulting a few oncologists, I decided to pass on chemo because none of the oncs, mine included, felt chemo was necessary. My MO made it clear that it was entirely my choice and I could do it if it would give me peace of mind, but when I told her that I didn't feel it was necessary, she was relieved. That was the same day she got me set up for Zometa for some added protection. Now, had I done the adding testing that Dara did, maybe my outcome would have been different as hers was, but I didn't and I can't even think about that now - what's done is done and it would only be self-defeating to look back over my shoulder. I'm still quite comfortable with my decision and sleep like a baby. #NoRegrets
Speaking of Dara, I'm SO happy for you that today's the last day for chemo. I hope you do well over the coming days. Sure thinking about you!
Since today is actually the day here, I'll say Happy Thanksgiving to my BCO 'sisters'. I hope you've all had a great long weekend. Hope you're doing well today, Leslie, with your recovery - at least it's a beautiful, bright, sunshiney day.
Hello everyone else - wishing you all a lovely day as well.
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hi- my mom had a lumpectomy on Thursday and seemed to be recovering well. Now day 4 post op she has nausea and vomited liquid. She had small bowel movement. Has this happened post surgery to anyone? She has ate small meals and on day 2 we went out for a little while during the day. Maybe she pushed it? Thanks.
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TraceJohn, welcome! I think you should call your mom's surgeon. Especially since she seemed to be fine for the first few days. I do not think this is usual. But the surgeon can tell you better. If your mom felt good enough to go out, then she should have. I went out the day after. I didn't resume my normal routine quite that quickly but I wasn't housebound either. Please call the surgeon right now! And do let us know what you find out.
HUGS!
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