Lumpectomy Lounge....let's talk!
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My BS did not mention the Oncotype test to me; I wonder if that is because my DCIS was ER-? Should I ask about it after the fact (it will be 2 weeks after LX when I have my follow-up appointment)? From what I am reading, for DCIS Oncotype is used to determine whether radiation is necessary? But given that my DCIS was Grade 3, I'm pretty sure no one would let me off the hook for radiation, so I'm just figuring I have to do that. If my pathology shows any invasive cancer, would I then want to insist on Oncotype being done, if it turns out that chemo is being considered?
Also, what the heck are nipple shots?? (Do I want to know? Ha)
Still no pathology report today. I will be placing a call to my BS soon to see what the hold-up is.
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The Oncotype Dx test for DCIS patients predicts the chance of local reoccurrence. For patients with invasive types of BC, it predicts the benefit derived from chemotherapy and chance of distant reoccurrence. The test is for ER+, HER2- patients. I asked my MO for the test and she ordered it. I wanted to know as much as I could about my cancer.
I believe the "nipple shots" refers to the tracer injection prior to lumpy surgery. The tracer is used to locate the sentinel node(s) for the surgeons. BTW, some people have one sentinel node, others 2 or 3.
Hope you all get your results soon!
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kay - the Oncotype testing is early stage ER+ with no or little lymph node involvement. Since you are ER-, I would guess that is why they didn't mention it. In my case, with the LX I knew I would need radiation. It was the chemo that was up in the air. Because of my low score I got to pass on chemo since in the long run the risk didn't outweigh the benefits.
I think the nipple shots they are talking about is for the SNB. They usually give anywhere between 1-4 shots of the tracer or dye. I was really lucky. Due to where my tumor was, I only had 1 shot.
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Jeanelle, thanks. Not having the sentinel node biopsy is what spared my learning about nipple shots, then! I am learning so many things here, even though they're things I never really wanted to learn.
I just called my BS's office about pathology report. Ugh, the waiting. I learned that my report has come back, but has not yet been proofread or finalized. It was probably delayed by the MLK holiday yesterday, plus the weekend. Once the report is final, it will go to my BS, and he always calls patients with results as soon as he gets them. That could happen later today, or maybe not until tomorrow. Ugh again. I haven't been this nervous about a phone call in a very long time! I'll let you know.
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Jeanelle, Fingers crossed!! HUGS!
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I too was told node and margin results at the time of my surgery. No MRI for me.
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Good morning ladies
After I had the partial mastectomy, and internal radiation, in Oct. 2011 but before my MO started me on Letrozole, he ordered a PET scan which showed no other involvement of the BC. I don't know how this would compare to a MRI, but I think they are similar. My BS removed the Sentinel node along with 4 Axillary nodes which were all clean.
Vickie
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Colleen I just wanted to jump in and tell you that I did not have an MRI either. I didn't question it at the time, but later did. My MO said it yields too many false positives, but she said had the radiologist recommended it she would have ordered it. I felt my radiologist was super sharp so I trusted her and my MO. I did however ask for an ultrasound for my left breast (the good one ) and we did that shortly after I was diagnosed.
I just wanted to say to all the ladies waiting for pathology reports I wish good (well as far as cancer goes) results for you.
Hugs
Nancy
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Ditto. Thinking of all of you. Please check in once you can breath again. Hopefully you will all be getting good news.
I had an MRI shortly after dx and did not have to ask for it. The knowledge of an involved node may have played into that decision.
I will have a thorough US of both breasts next month to do some measurements of the remaining tumor and node and look for any other changes prior to planning surgery. I'm sure if anything more is needed we'll do it after the US. I have dense tissue as well and am not sure how that affects each type of imaging.
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I too had a scare in my right breast, and an MRI biopsy was ordered. Thankfully, it was not cancer. But I did have an MRI once my left breast had been DX., I do think it is routine here at my hospital. it feels like its been forever since I receive the DX, but with traveling and holidays and the scare in my other breast, I am now just 2 days from surgery and getting anxious about the results that will be forth coming. I just keep telling myself to breath, nice long deep breaths. Of course the wine and soak in the hot tub have been helping me get to sleep. However, I'm awake at 4/4:30 most morning and well, then I just lay there and think way too much. I keep telling myself, to expect the worst, and be happy when it's not. But I'm trying to change the recording in my head and tell myself all will be good. Just not sure I believe it quite yet.
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Bikerbabe, it is hard to change the voice in our heads, isn't it? I think we're afraid to allow ourselves to believe anything will go right because we don't want to be even more let down if it all goes sideways. It's very natural.
I do visualizations and imaging to counteract that but my mind has a mind of its own.
Take good care of yourself these next few days and remember, we've to your back.
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HI All - For those that are currently waiting for results - that can definitely be the most difficult time of all.it is hard to quiet your mind and take one thought at a time. All of us here may not be getting the same answers that you could be, but have all been in your spot.
I had my lumpy in September, finished rads in mid-December. Today was first visit after the surgery and radiation. It all went very well. It seems like almost all my swelling has subsided, the scar line looks fine. I could use some Vitamin E creme and massage the scar line. My first post radiation mammography will be in June. The other girl can wait for the annual in August. If there are any other microcalcifications it doesn't mean automatic surgical intervention unless they look suspicious. To her right now, I am in a very good place. One appointment down and two more to go on Thursday.
MarieBernice6234
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Thank you everyone for your answers.
I did talk to the BS Nurse and she said all the same things. ;-)
I wish I had a zanax to take. I get anxious just typing. hahhaa
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Carrie, ask your BS's office to call in an RX for you. Honestly, there is no reason to have to go this alone. I don't take the Ativan very often (and usually cut into .25 mg. pieces) but it's really good to have it and I'd never taken it before this dx.
PS - With an inexpensive pill cutter, it's easy to cut into little pieces. I use tweezers for positioning.
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I agree with Hopeful...I never took anything before dx either. Xanax helped so much in the beginning. I rarely take it now and if I do I take half at bedtime. No use suffering any more than we have to.
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Bikerbabe, I totally relate to the 4:30 a.m. over-thinking. Me too. I hope you soon have good news.
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Yay, MarieBernice!
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Okay, so I FINALLY got word of my report late today, after another day of anxiety. The problem was the holiday, compounded by the fact that it turns out my BS is currently out of town and not due back until my appointment with him on Monday. But someone did call me and basically went over the results for me, and they are pretty darn good: My DCIS has been downgraded from Grade 3 to Grade 2, for starters. And the tumor, which was larger than I expected at 2.4cm (no wonder I have that dent!) was only DCIS, no invasive cancer. Yay! AND, margins are all clear. Whew. There is only one close margin, less than a mm, and that is still the question. The person who called told me that my surgeon sometimes will go back in and take more tissue in that case, and sometimes not. My research has told me that current standard is that any clear margin is sufficient for this kind of surgery, but I'll have to see what he says. I'm hoping that since I will be doing rads, he will think that's enough. But overall, I'm greatly relieved. Thanks to all of you for all the support, it has meant the world to me. And thinking positive thoughts for everyone else still waiting.
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I am scheduled to have my lumpectomy in a week size .09CMM and they're doing a lymph node check as well - I'm a little scared about some wire they have to put in before surgery and dye injection in lymphnodes before the surgery. Is this awfully painful?
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Kay - Wow! What a huge relief, yes?? Especially that it was downgraded!!! So pleased for you.
Still crossing my fingers for the others.
MarieBerniece - good to hear from you!
Lucy, the experience with the wires doesn't seem so bad (they use lidocaine) but the dye injections seem to vary a LOT. Ask for numbing cream, ativan and anything else they can give you to make the experience as easy as possible.
Come hang out with us for any answers, advice or hand-holding you need. We're pretty good at it.
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No, not at all. It sounds awful but it really isn't. The nuclear injection can sting for a little moment but the wires are put in after lignocaine and do not hurt at all. They certainly didn't for me. They and the dye guide the surgeon to the critical areas. The sentinel nodes are nearly always checked with a lumpectomy. Hope all goes well. Best of luck
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My sentinel nodes were not checked with my lumpectomy, as I've said, so not always. I'm pretty sure if my pathology had found any invasive cancer, though, the sentinel node would have been checked next.
For me, the wire procedure was pretty tough. However, I think that's because a. My breasts are small, so just getting them properly into the mammogram machine is a little hard. And b., I had two different areas that had to be localized, and it seemed to me that the radiology people found that a little bit challenging to do. The lidocaine did hurt going in, and the squeezing was uncomfortable, also the position I had to hold for this whole kind of prolonged time. But most others seem not to have had that much trouble with it, so hoping you're like that too, Lucy! You probably will be. Once the lidocaine was in, it really didn't hurt to put the wires in.
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You are quite right - I should have said that they are with IDC but not with DCIS.
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I think it's less likely that nodes will be checked when DCIS is involved, as Kay mentioned.
The wire insertion can also be done using US, which seems a lot more comfortable to me, just in terms of positioning, etc. Much depends on the location of the tumor, of course.
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Hi Ladies, it's me again.
For the lumpectomy, can you tell me how they did the needle localization? I ask because they want me to check in at 8am to have that procedure done.
My check in for surgery isn't until 1:30pm. Surgery being at 3:30pm. I called inquiring about the long time and they stated they didn't have a room available any other time.
Do you have to stay there the entire time, can I put my own clothes back on? Will there be wires sticking out of my boob?
I called the BS and left a message, but thought I would try here too.
Thanks once again.
Can you tell I'm anxious. And I still have a week to go. lol
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Carrie, generally they want you there somewhat ahead of time to allow the dye and nuclear materials to flow through the system. You will probably be in a hospital gown and pants with a robe. The wires are very, very fine and are either taped down to your breast or covered with something to protect them from being dislodged, etc. They won't be sticking out! (All of this is per my nurse navigator, your experience may vary.)
I will say that this sounds like an awfully long day, given no food or drink is allowed. They will have the anesthesiologist meet with you and various other types but it still sounds like you'll have plenty of time to get bored and tired, even with family hanging around with you. That may be the worse aspect of the entire experience.
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I'm home. They took two nodes and both were clear. However LVI was present and I read online about it and I'm scared. He didn't seem that concerned by it and didn't even mention it until I pointed it out. My grade changed from Grade 1 to Grade 2. The margin was really close on one side so he's going back in next week to get a little more. He said he got all of it but wants to take a little more for insurance. It ended up being 2.4 (MRI said 2.3 so it was close). I don't know what to think right now. I am just mentally exhausted. Am I doomed?
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Carrie, my surgery was supposedly scheduled for 9 a.m., and the hospital wanted me there at 5:30. The wire localization was scheduled for 7:30, and I was told that they have to allow plenty of time because can never be sure how long wire will take. It also seemed like a crazy-long period of time before surgery to me. What actually happened: we showed up at 5:30, checked in on the kiosk thingie (which informed us, for the first time, that my surgery had been bumped to 11:30), and took a seat in a fairly crowded outpatient surgery waiting room. It was a long time—maybe around 45 minutes?—before I was even called up to the desk. I had to sign some papers and then I was taken back, put into gown, and soon after that i.v. started. Then I basically sat in the day surgery waiting area, in a fairly comfy chair in my own little curtained cubicle, and waited. My husband was able to come back and sit with me. The anesthesiologist came by, more papers to sign, etc. I was finally taken up for the wire localization around maybe 9 or 9:30. That took quite awhile, but after that I was wheeled back down (yes, the 2 wires were taped to my chest, under the gown, and they didn't hurt at all) for more waiting in surgical holding area. Surgeon came by to chat. Nurses kept telling me it would be time soon. Finally I was walked across the hall to the O.R. by about 11:40. Woke up in recovery, spent awhile in there getting my bearings and having some cookies and ginger ale (at that point I hadn't eaten or drunk anything since about 10 p.m. the night before, and now it was something like 2 pm maybe? 2:30? Got dressed and finally left the hospital about 3:30, for the hour-long drive home, with stop to pick up our dogs. It was indeed a long day, and the waiting was hard, especially since I was tethered to an i.v. all that time. Take something to read. I read a lot, talked to my husband some, checked email on my phone, eavesdropped on other patients and families and doctors & nurses around me, tried to rest some because I'd hardly slept the night before. It was boring, yes, but having something interesting to read helps. It is a little annoying that it can go like this, but you'll get through it. Your surgery is scheduled for late in the day, even later than mine, so be prepared to wait. What is the latest you can eat and drink?
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Dear Shelley - No, you're certainly not doomed. You have no idea how important it is that your nodes are clear, notwithstanding the LVI and the upgrading. (You might take a close look at the path. report and seem if you can spot what element of the scoring bumped you from grade 1 to 2; sometimes that's useful in getting your mind settled, as I recall.)
I understand that you're disappointed but, frankly, if I'd gotten that report on my own pathology I'd be pretty happy. That's just my own perspective, speaking as node positive.
I know you'll still have to meet with your MO to talk further treatment but I am crossing my fingers that you'll be fine with just rads. and AIs. How long for your Oncotype results? A couple/three weeks?
Go relax, have a glass of wine if that's your thing, do some yoga, play with the dog. You've gotten good news, even if not perfect news. Which is NOT to say that I wish it had been even better. Hug.
A random thought - it strikes me that a dartboard would be very therapeutic to have around the house, wouldn't it? Possibly hazardous to the cat or dog; we'd have to teach them NOT to stray into the path of that rage-powered dart...
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Kayfry, Clear nodes and clean margins! Fantastic news. One of my margins was 1mm, and that was good enough for my tumor board.
Shelley, I'm glad you finally have your report. As I mentioned to Kayfry, I had a 1mm margin with no additional surgery. What did your report say about the LVI? Where was the incursion? But your nodes were clear, right?
No one truly wants to know about my surgical experience because it was truly abnormal and involved building evacuations and crazy people. I did have the needle localization wires (4 of them) sticking out of my breast for hours. They were secured in place with gauze and didn't bother me once I realized they wouldn't move around or hurt me. For the localization and dye/tracer injections they numbed the area with lidocaine.... which stung at first.... then no big deal. Just the idea of what was happening was the hardest part!
Peace and blessings to all of you!
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