~* The Waiting Room *~
Comments
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B9!!! So happy.
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So glad for you, momwriter!
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Congrats! Now take some time to celebrate today. Have a very blessed Christmas!
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Thank you Laurel and Armamp. It was a fibroadenoma. I realize I got a hail Mary pass and am so grateful. Enjoy the holidays!
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Add me to the room next
. I have a new, slightly painful lump on my "unaffected " side as they keep calling it. Had a normal mammo end of September, and while the radiologist could feel it, he didn't see anything on ultrasound last week, so I'm waiting until the right part of my cycle at the end of this month to have an MRI to see if that sees anything there since the surgery np I saw is still concerned given my dense breasts and history. I'm alternating between being calmish and trying to enjoy the holidays (I'm on tamoxifen and what are the chances, really?) and being upset about the prospect of possibly going through this all again about a year later (I know this bad luck crap happens sometimes!). So, hi all, and here's hoping for good news for everyone! And congrats on your benign result, momwriter 
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Hi Floaton-
Thanks for the good wishes!
During my recent scare, it was only when the thing that was supposed to be a cyst did not aspirate and they had to do a core needle biopsy that I got super scared (dx- PTSD). I have dense breasts too- and it makes me question why I didn't do a BMX- am I stupid to keep this risky breast? When I was feeling fear logically, I thought to myself that at least it's early detection and I'm an old battle axe now and I'll get through it. I also asked myself, is there anything I'd do differently in how I'm living if I knew?
Waiting for test results drove me a little crazy. But between tests, because like you, it was an unlikely recurrence, I could pretty much compartmentalize and stuff that fear away- (though I can't lie- sometimes a late night shadow/worry kept me). I still had fun taking my kids to their activities and I enjoyed a project I was doing for work.
My thoughts and prayers are with you for a positive outcome at the end of the month. I will be in your pocket for that test and results. But until then, here's to lots of holiday distraction and joy!
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Momwriter, when I chose to get a unilateral mastectomy (in part because I wanted to recover as fast as possible due to having an infant at home), I thought then I would get rid of the left one as soon as I needed so much as any extra testing/biopsy on it. BUT that was before I'd had a year of post-mastectomy arm pain, a frozen shoulder, and lymphedema on the right, so now one of my priorities is also keeping my left side in as good a semblance of working order as possible. Chemo also seriously kicked my butt, so much so I had to stop early, so the fact I'm really not sure I could handle it again I think is adding to my anxiety, when it creeps up anyway. My toddler and Christmas are definitely keeping me busy, so I'm thankful that it's a busy month! Take care and thanks for thinking of me
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MRI is finally here, I'll have it later today. Any positive thoughts are appreciated
! The person I talked to yesterday said it'd be about a week for results due to the holiday and all. So thenit's back to waiting again 
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Anxiously awaiting the results of an MRI of the pelvis and hip and hip arthogram. Had the procedure done this past Friday and have been trying to get the results from my orthopedist since Monday. Haven't slept much since Thursday night....hoping for a call tomorrow. The xray in December was clear, but with continued pain, ortho wanted the MRI.
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Floaton and WandaWoman- sending lots of positive thoughts to you both. Hope your New Year brought you good news and joy. Either way, thoughts and prayers with you.
I have to go for a vaginal ultrasound followup after my PCP thought she might have felt something-- so am thinking of you all as I schedule this. I guess this process of call-backs is just part of the "journey." So far, except for that one bad time at original dx, my call-backs have been B9. Hoping to continue that trend. Calling to schedule. trying to think of it as just a bump in the road. Hugs!
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Hi, so my Mom is scheduled for two biopsies tomorrow. I was able to find out a little more information from the doctor's office performing the biopsies. As it turns out, they initially questioned the left breast (the good one) during the mammogram, which prompted them to do the ultrasound. The ultrasound was then performed on both breasts, since why not. That is when they saw the other spot on her right breast near the lumpectomy. The 3D mammogram never picked up the spot on her right breast, only during ultrasound was it found. As far as I know, she has never had an ultrasound done since after her lumpectomy. I guess my question is, could scar tissue easily show up on an ultrasound but not a mammogram? I spoke with the doctor who performed the ultrasounds and she was pretty confident the left breast spot was benighn and was only measuring 3mm. The right spot is right near the sight of her lumpectomy and she said it could be scar tissue, but cancer and scar tissue look the same.
Thanks in advance for keeping me sane during the waiting game......
Quick update - I called my Mom's breast surgeon's office and spoke with the nurse. She said it is most likely scar tissue and not to worry. She said she gets these calls all of the time.
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I can't seem to make paragraphs, it all runs together, so I am going to try using //// to separate paragraphs in this long post.///////////////
Hi again Ladies of BC.org, how I have thought of coming back so many times to check in and let others know how it went 5 years later, but I didn't come. I had a troll on the board chasing me and I didn't want it to start again.///////////////
But here I am again, because there's no other place or information about my options if I have a local recurrence adjacent to my lumpectomy site. I'm pretty darn good at researching but Google only wants to tell me about radiation after mastectomy when I ask it about mastectomy after radiation, or reconstruction after recurrence.///////////////
I had the usual complete jerk @$(%& story about even getting here, I moved to Philadelphia from NYC two years ago and had ridiculous trouble even scheduling the regular follow up MRIs, and the usual circus of chasing down the results... ///////////////
This time they only sent the addendum that called it as "BI-RAD Category 4, suspicious abnormality, go get a biopsy" to my local GP even though I had listed my ONC and another GP and my GYN, so they send to 4 docs BI-RAD Category 0...but only one doc the change to category 4...///////////////
it says on the same addendum line of the report that they spoke to my ONC the same day they did that last addendum- I guess they didn't bother to discuss it with him or send him that addendum.///////////////
I was so happy I found a facility that would do pelvic and breast MRIs on the same day, instead of having to go through hell twice, I could do it once. Problem is that my ONC only got involved with a lesion on my femur, which I totally understand takes precedence over a local recurrence, and he was telling me not to worry it was benign and something he's seen since 2012 but the new facility didn't have the old records so send everything to him in NYC ....///////////////
And well YAY my leg was b9, but he didn't pay attention to my emails and phone calls telling him HEY HEY HEY THERE'S AN ADDENDUM DO I NEED TO GET THIS BREAST BIOPSY???? Finally after 5pm Friday, oh, he said, "that can be a problem, you probably should get the biopsy". He put a "stat" on the review of my scans I had sent weeks ago, as if I could get that in a couple hours.
He couldn't even call for precert because his hospital hadn't reviewed the boob MRIs I sent, only the femur. He couldn't even begin to schedule a biopsy until that review was complete. ///////////////
Luckily I didn't wait around since I can READ I called the same doc who did my MRI and biopsy in 2009 and already had an appointment, for Monday, which I had canceled.
I called over the weekend and left a message that I was going to make a run for it on Monday, and by the time I was half way there they called and said the doctor had been snowed out of the office, all appointments canceled. Rescheduled for Tuesday night. 10 hours of travel I get the biopsy and home at 1030pm with my 7 year old who stayed with friends after school (I'm a single mom), and Wednesday we leave for vacation to visit my 90 year old father in Miami and then to our vacation in Jamaica.
Right, not supposed to lift anything, ooookkkkkaaay.///////////////
Just as I was leaving the house the radiologist called and you know, my heart clogs up my throat thinking she has news and she's just calling to check on me after the biopsy. As I left the house I heard myself thinking, "This could be the last time I will look at this room as a person who doesn't have cancer, this is the last time I will" etc. etc. The last time before my life gets sucked into that hole of horror for a year or more.///////////////
That's when I decided that there was no point in knowing while I was on vacation.
I have done all that I can do, I had called the Pink Lotus (bless you Angelina Jolie) and I think they said this is something they do but now I cant be sure because there's nothing about MX after radiation on their site.
If only there was a way to know good news without knowing the bad news.///////////////
My research says BI RADS category 4 is 25% chance of bad news. Alternately, local recurrence is most likely to happen at the same place as the original. And then again, so is mistaking scar tissue for cancer. The squirrels in my head just keep running around and around.///////////////
I turned off my cell phone, and when the email arrived (no subject line) from my radiologist's office I didn't open it, just put it aside. Likely it only says I should call the office, these guys dont do email and there probably is some prohibition about notifying either way by email...
but my ONC and GP have sent me good news on MRI reports before, so why wouldn't they do so now? They're on the notify list. And where's the review of my MRIs on my boob he promised last Friday? Are they afraid to look like jerks if their MRI review contradicted the biopsy results? Squirrels in my head again...///////////////
I still think its the right decision not to know until we get home on Wednesday. Tuesday is my son's birthday. I already can't swim until Monday according to doctors orders. Of course of course if they hadn't mucked about for weeks I wouldn't have had to have the biopsy the night before my flight, I'd have the results before I left, make my plans ,be able to swim. Well maybe its a blessing because if I did find out I had it again I don't know what shape I'd be in... except worse than I am now. I spend my time in the hotel room mostly or walking the grounds talking to friends, but tonight when my son didn't bother to give me a Valentine I just started crying.///////////////
I have had some stretches of time where I forgot and was in the moment, and happy. If it comes back bad I will be grateful for those.///////////////
Do I dare to hope I am in that 75%?
It's like 6 years to the day from the DX in 2009.
BC.org said something about updating my stats with an a or b, but since my DX is old, I dont have an a or b, I hope my stat line comes up, in case it doesn't
Stage I, ER+PR+ HER2-, OncotypeDX 17, lumpectomy and radiation. Tamoxifen.///////////////
I have it so much easier than most here, I have no business complaining like I am.
I found this thread because it is the only place I have found any information about what I might be able to do if it is cancer. 3mm.///////////////
Is there any chance they would just take the 3mm and not need an MX?///////////////
Is there any chance they would just take the 3mm and not need chemo?///////////////
Can they do an MX with immediate recon on my radiated boob?///////////////
What's that like?///////////////
I am fat, I had just committed to spending my summer at a fat farm when this happened, so if they build me one new boob, and then I lose weight, and my good boob shrinks like it usually does when I lose weight, a couple cup sizes, does the foob shrink or do I need to surgically shrink it?///////////////
What are the stats on that?///////////////
Fcol, these recurrences are widespread, why isn't there a small mountain of information like there is for everything else about BC?///////////////
And in the end after reading only the last two pages, I would not blame anyone for thinking I had no business whining over my measly 3mm local recurrence or the waiting that I decided myself to make happen (although of course they said results in 1-2 days and instead it was 4... that is, assuming that's what that email was...)///////////////
I am just frustrated trying to do something positive to counteract all the negative thoughts flooding my brain and choking me with fear.///////////////
You're all so brave, I am just a total wimp whiner. Thank you for posting so much information and sharing so much. I just had to vent somewhere and I have already driven my BC support group and friends nuts.///////////////
I do promise to report back on Wednesday.///////////////
Sending love and positive thoughts to everyone.0 -
Rachel,
Wow lady, that's some stressful and scary stuff you have going on. That squirrel needs a rest. I agree with you about finding something you enjoy, something to keep your mind busy. It makes me sad when a team of medical professionals are seemingly so disorganized.
I wish I had the answers you are seeking but I felt the need to respond. I wanted to tell you that we are all afraid and you are not a "wimpy whiner." Looking for support and understanding does not mean you are not brave. You are doing what needs to be done and not letting fear stop you. That is definitely brave in my book.
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Sharon, thank you so much. I'm just screaming out the questions in frustration, and hearing back from you is what I needed. I wish actually that no one was here, of course, everyone healthy. It helps so much to hear I am not alone. (But again, I'd give that up if only no one had to have this horrible thing.)
I took off the steri strips today because they said not to leave it on for more than 6 days, and I could swim tomorrow, they said that was the 7th day, but I dont count it that way... anyhow I was happy because the biopsy wound is so small and I thought it had scabbed over. I put a bandaid with antibiotic (already on it) and went for breakfast. Just now I thought it might be smarter to let it get some air so I took off the bandaid and I was surprised to find it bleeding. It hasn't scabbed over. It's otherwise just fine. I have some derma tags for tomorrow, but I think it was supposed to at least be scabbed over.
I am not sure what to do so for the moment I just put some kleenex over it, want to see if it dries up or keeps bleeding.
Thank you, thank you so much for your kind response.
I'm adding you to my prayers and positive thoughts (I can be positive for others, even if I am squirrel brained for myself )
and I wonder why I can't make paragraphs?
Gonna try submitting without previewing this time...0 -
Oh and this is the only article I was able to find that was close to dealing with this question... From the American Society of Plastic Surgeons... although in their study "Reconstruction began at least three to six months after the completion of radiation therapy."
No idea if 6 years is better or worse...
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Technique Provides New Option for Breast Reconstruction after Radiation Therapy
http://www.plasticsurgery.org/news/past-press-releases/2012-archives/technique-provides-new-option-for-breast-reconstruction-after-radiation-therapy.html0 -
You're welcome. I just spoke the truth. I hope you get good news and you can celebrate in Miami and Jamaica.
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I am feeling so much better now. Maybe because of you/////
Maybe because Valentines Day is over and that was emotional/////
Maybe because yesterday I drank some sake and I think combining the alcohol with the xanax made me a sad drunk////
Maybe because I was watching Kung Fu Panda and it was funny, instead of the news, which is a horror show on it's own. And there was one quote, "Yesterday is history, Tomorrow is a mystery, Today is a gift, that's why they call it the "present".//// OK, it was a talking cartoon turtle, but it made sense. //// And I realize now that what I am fearing every time I start to forget it or have a positive attitude is the way I felt when I was first diagnosed, like a house fell on me. I don't want to set myself up for that kind of hurt again. But I am trying to give myself permission to let myself have these days, and let myself address this on Wednesday, when I can go back to fearing the worst.////
You, or the cartoon turtle.////(I really hope my attempt at humor is translating the way I intend here.) 0 -
Lol. That made me laugh. I get it. No worries.
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I am 3.5 years out from my diagnosis. I had a bilateral mastectomy with expanders
and silicone implant reconstruction with alloderm. Recently, I discovered a lump near the
bottom of my reconstructed breast (cancer side) which I believe is new. It is not near the location of my original
cancer which was in the upper outer quadrant. My breast surgeon sent me for an ultrasound and MRI but felt the lump
was scar tissue. The studies were both negative and did not demonstrate the lump.
My plan is to request the lump be removed despite my surgeon’s feelings it is not necessary. I believe other
than obvious reasons to avoid surgery; he is concerned it will disturb the implant. My question is has anyone had a
lump after mastectomy that was a recurrence and did not enhance or appear on imaging? My original cancer was
multifocal invasive ductal (largest focus 2mm) with DCIS and LCIS. ER/PR+, HER-, 0/4 nodes and Oncotype 8. I had a total hysterectomy and take
Arimidex. Any feedback or recommendations welcome.0 -
This topic has been on my favorites list for years, is usually quiet, and is suddenly popping up with all kinds of activity.
{{{{{Rachael}}}}}, glad you are feeling better, enjoy the rest of your vacation, and no you are not driving me nuts. You can email and vent to me directly if you don't want to post on the group. Funny you would mention the "Yesterday is history, Tomorrow is a mystery, Today is a gift, that's why they call it the "present" quote. My breast surgeon's practice had that on the front page of their website when I was going through active treatment back before that movie was made.
4My3kids, have you asked about a fine needle biopsy for the mystery lump? It is far less invasive than even a core biopsy, and will either set your mind at ease, or inform the Dr about the need for further treatment. What you feel is probably scar tissue, but it is nice to have pathology confirm it.
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IT IS NOT CANCER!!!!!!!!!!
I am a total jerk for not explaining that I counted days wrong, I was flying home on Wednesday, and wasn't going to try for results while I was traveling.////I figured that out on Monday but I had already decided not to even open my computer again in case some other doctor slipped the news, like, organizing my consultation for next steps or something (btw, they have done zero, like not returning my films as they promised they would, not posting the results of the review they put a "stat" on 10 days ago- feh on them)/////I couldn't even figure out how to log on from my iPad to BC.org to post (no email on my iPad)/////
Today I dropped my 7 year old off at school, got a box of donut holes for his class to celebrate his birthday, went to the mechanic who I'd been putting off during the waiting period because I just couldn't handle anything, grocery shopped... I did everything I knew I wouldn't be able to manage competently after getting crushing news... I was just so sure by the time I called for the results that it was going to be bad news... I even wrote the letter I would send out to the list of people who I'd promised to give results to, because I wanted to phrase it as calmly as possible, another thing I wouldn't be able to do....///////
I did move forward with enjoying life while on vacation, after I posted the Kung Fu Panda quote. That day was the day I would remove my steri strips, and the biopsy site was not bad at all, quite good, so I felt a little less like a "patient".//// The next day was the first day I could go swimming, after 4 days of sitting in the hotel room or walking the grounds because I couldn't do this, and I couldn't do that... and I hit the ground running./////
I did SCUBA training in the morning, snorkeling in the afternoon, I hit a yoga class and then took my son swimming.///// Tuesday I went for more SCUBA training in the morning, and my first dive in the afternoon in the sea, I earned my PADI certification.//// I was all high about that until my ear started to hurt and that was an issue in case I could not fly home, and I was going a bit nuts about not going home, if I would have to wait even longer to get the news, was that good or bad..../////But my ear was fine and I flew home./////
So here is the point for all the other wonderful women (and maybe men?) in the waiting room:
BI-RADS CATEGORY 4 SIX YEARS AFTER DX, WAS NOT CANCER.//// She said something about how I didn't even have to have it removed because it was uhm, changes after radiation or something but I could not even hear her after the part where it wasn't cancer./////I was a babbling idiot and I still cannot believe my good fortune.////And I apologize again for not updating to say I would not get the results until THURSDAY instead of Wednesday, for any moment anyone worried needlessly about me./////
I think it's important to post when it turns out GOOD in the waiting room.////
THANK YOU THANK YOU THANK YOU THANK YOU////(and I still can't make paragraphs)////
My positive thoughts, prayers always with you0 -
Oh and true enough, the doctor is not allowed to put the news in an email, even if it's good.0
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Ah Pat, you found me here I was trying not to lean too hard on the group (we have a group that stuck together off BC.org for 6 years, you're all welcome to join)////
Pat is so smart about this stuff.////
Funny about the quote!////
Sharon, if I made you laugh that really makes my day. You really helped me.////
4My3Kids, I am still pretty well out of my mind but during my research (I am pretty good at the research side of BC)//// What I learned is that they are pretty darn good at diagnosing from an MRI. Is there a BI-RADS Category? You said it was "negative". If it was "negative" that is BI-RADS catergory 1, (not BI-RADS Category 0 btw, 0 means they need more information and don't know anything).////
My searching is confusing me, because although every source agrees that Category 1 is "negative", so much so that they don't even bother to include the Category 1's in my of the studies, and most of these studies I am now finding that even Category 3 is all of 2% malignancy, but I am seeing as high as 4% malignancy in Category 1 from studies from 2012.////
It might be that they wouldn't know where exactly to try to biopsy in a Category 1.//// This is an annoying situation, and if you can get your doctor to explain why you shouldn't even biopsy to be sure, and if that satisfies you then OK, but if it doesn't, I would stick to your guns and whatever it takes to get that removed/biopsied, I would do what it takes to make that happen, including going to another doctor who might be more capable and confident to work with the implant area. ////
In short, what Pat said (she's really good, and I am still out of my mind)////Here's some of the links, again, I can't seem to get paragraphs so separating with *******
http://www.ncbi.nlm.nih.gov/pubmed/10352614*******
http://radiopaedia.org/articles/breast-imaging-reporting-and-data-system-birads*******
http://www.cancer.org/treatment/understandingyourdiagnosis/examsandtestdescriptions/mammogramsandotherbreastimagingprocedures/mammograms-and-other-breast-imaging-procedures-mammo-report*******
http://pubs.rsna.org/doi/full/10.1148/radiology.211.3.r99jn31845*******
http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=99350*******
http://weinsteinimaging.com/userfiles/breast mri 1.pdf0 -
Woohoo Rachel! That's great news.
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I am so scared. My 43 yr old DW is in a bone scan right now to confirm or deny bone mets from a suspicious MRI last week.
We have two young children and I cannot fathom what we are going to do if the worst is confirmed. I just look in our 4 year old daughters eyes and want to break down.
We are supposed to know the results no later than tomorrow morning. The onco said that she is not convinced it is mets from the MRI but I just have a very bad feeling about it. Our luck has never been good and this is part of a string of events that have hit our family in the past month.
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Have a PET scan next Friday due to back pain and tenderness on some scar tissue. Is there anything i should avoid in terms of food/medicines beforehand? How quickly can the results get to me? Freaking out here. Thank you!
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Hi tinkerbells. When I had a PET scan, I was placed on a zero carbohydrate diet for 2 days prior. They dont want sugar in your body. Tou will want to ensure you call the place doing the scan for specifics of how long they require you to follow this protocol. Its pretty standard to follow this type diet ahead of time. Good luck and I hope you are well.
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