Lumpectomy Lounge....let's talk!
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Vampeyes - my surgeon did get clear margins of 2mm - I guess that's the minimum acceptable? Right now I'm trying to decide the course of my TX. I've got a strong family history of other cancers and am waiting for genetic testing results to decide between radiation or mastectomy. I've been researching and researching - it's pretty overwhelming. Stay strong.
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I haven't even heard when I will be getting the gene testing done. You would think with a 2-3 month waiting time I would be getting a call for an appointment. Heck I don't even know what type of BC it is yet! So very frustrsting, all these unknowns.
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The unknowns are definitely crazy making.
Maybe call and ask for a copy of your pathology report from the first lumpectomy....I'm sure your surgeon has it, because that's what told him/her that the margins weren't clear. Hopefully they can email it to you.
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I echo what tlfrank said, vampeyes - always ask for a copy of every report. I still go back and review mine from six months ago. Your head can't absorb everything the surgeon or radiologist tells you so you need those reports to get a good handle on your situation.
So glad to hear about your clear nodes. Best wishes for clean margins in a couple of weeks!
MJ
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I will call tomorrow am and see what they say. Thanks for that suggestion ladies. Patience is not my strong suit and all this not knowing is wearing on me. Not being able to exercise is frustrating.
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tlfrank, "my surgeon did get clear margins of 2mm - I guess that's the minimum acceptable?"
My smallest margin was 1.2mm, and my surgeon said that was enough. Hopefully he is right!
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AngelaJL - I'm sure he was!
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I didn't have clear margins the first time, either. Re-excision fixed me right up. Good luck!
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The latest standard for clear margins, acc. to UCLA surgeons, is "no tumor on ink." So that can even be a fraction of a mm. I would not be so quick to assume the inevitable appropriateness of a mastectomy absent other factors that might justify it: known genetic mutations, family history, multifocal tumors, large tumor size relative to small breast size, medical conditions that would contraindicate radiation, etc. But if you really believe a mastectomy is where you're headed, why not just cut to the chase (no pun intended), rather than go through a second lumpectomy? It's your body and your call, even though you have national health coverage. (Personally, my opinion as to surgery is "less is more" and that you can always decide later to get mastectomy--but once a breast is gone, it's gone. No such thing as a "breast transplant." And even the best reconstruction will not feel to you like a real breast).
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Hi ChiSandy, I really appreciate what you have written. Yesterday when I seen my BS he stated that the margins were not clear due to another tumor found, one not seen on the mammogram or ultrasound. My fear is what if there are more of these 3mm tumors they are not seeing in my breast? Then I am going through this process all over again, the waiting is killer alone! I was going to remove it on the 15th, but my husband talked me out of it. He is worried that the genetic test will come back positive and the right side will have to be removed as well. We figured wait, do double mastectomy and reconstruction at the same time. My BS does not do reconstruction, this is done out of town. BS wants to remove the tumor asap, he says it grows weekly? I plan to call later for a copy of the pathology report, as I am still unclear on what type of BC I have.
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Vampeyes, do you have reason to believe you inherited one of the known genetic mutations, based on either ethnicity or family history? If the tumors are multifocal, or if your BS suspects they are, you should be getting an MRI (not just ultrasound which failed to reveal them) "yesterday." Your tumor, unless it's inflammatory breast cancer (and believe me, you would have definite symptoms if you did) does not grow so fast (much less "weekly") that it has to come out right away. Are you in a rural or semi-rural area? How old is your BS? What % of his practice consists of breast cancer surgery? From what he appears to be telling you, he sounds very old-school and behind-the-curve (almost as far back to the days when women were given general anesthesia for surgical biopsies and didn't find out the diagnosis until they woke up with or without that breast). You should NOT proceed until you know what you're dealing with--his failure to give you the path report marks him (IMHO) as one of those patronizing anachronistic "I'm the doctor and you don't need information because I know what's best for you and you have to accept that" docs.
Just so you know, I'm Ashkenazi Jewish and I had my genetic test only after my lumpectomy. And not all genetic mutations are equally dire in terms of your absolute risk or the aggressiveness of the type of cancer for which you'd be at risk. You really, really need to get to a university-affiliated urban or large-suburban major hospital with both breast health and cancer centers.
EDIT: Ah, I see that at least you finally found out your tumor is IDC. But by now you should also have been informed of its hormone receptor & HER2 status. My advice still stands.
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Vampeyes, please listen to Sandy. She really knows this stuff hands down. She won't steer you wrong. And if she doesn't know something, she'll tell you that. But it would be an unusual case for you to HAVE to have more surgery NOW! Mine was about 6 weeks after DX. I also agree that you need to be with a knowledgeable BS, not just a surgeon who does BC surgery. And someone who is up on the latest treatments of BC.
HUGS!
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Hi ChiSandy, I picked up a copy of the pathology report at my family doctors today. It states invasive mammary carcinoma with no special type, after lots of reading I seem to understand it to be categorized as IDC. Unfortunately with my family background of divorce and deaths, I have no idea if there is any breast cancer in our family, he says I will be tested for the gene because of my young age. It does state Multiple foci of invasive carcinoma on the pathology report, does this mean multifocal?
I asked the cancer nurse about MRIs before my surgery in October and this is her response: "Very few women qualify for a breast MRI. There are only specific situations in which a breast MRI is warranted. All of our surgeons and our radiologists are very thorough and would order that if you needed it. I will have a look at your report again to see if the radiologist recommended that, but it is very unlikely. It would appear that your case is very straight forward and the imaging done is sufficient to move ahead with surgery."
I wonder if I would qualify now that it is multifocal?
I live in a small town close to a city dubbed "chemical valley" lol I trust my surgeon, hes just not very forthcoming with the information, have to ask the nurse to answer any questions. Currently she is on vacation.
I just wish all the test results were back and I knew what the plan of action was.
Cheryl
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Here in the US, the criteria for MRI are young age, multifocal areas seen on other imaging, and (especially) dense breasts. Nearly half of younger and smaller-breasted women have dense breasts. I know the NHS up on your side of the border is stricter as to the allocation of treatment, but you sound like you would meet the guidelines.
"Invasive mammary" could be either IDC (ductal) or ILC (lobular), which do behave differently (and ILC tends to "hide" from conventional radiological imaging, making MRI more necessary). "Foci" are individual areas of possible masses, distinct from surrounding normal tissue. "Multiple foci" means there are several suspected tumors. If they are widely scattered, resemble the first tumor removed and the breast is small, a unilateral (single) mastectomy is a reasonable choice if you don't want to deal with multiple biopsies. Bilateral (double) mastectomy makes sense if there are suspicious areas on the other breast and especially if you test positive for the BRCA 1 or 2 (or Chek2 or PALB) mutations. Because of the difficulty of your compiling a family history or ethnicity (BTW, if you have Quebecois ancestry, that's another ethnic group in which a mutation is more common than in a random sample of the general population), it makes sense to do genetic testing. Considering the cost to the NHS, that's not a decision they make cavalierly. Your proximity to an area with a high concentration of probable chemical exposure (especially if there are "cancer clusters") also raises a red flag, though industry will deny there's any correlation.
Cheryl, the fact that your surgeon appears to have poor communication skills (or at least no bedside manner) and your inability to reach his nurse on vacation (my husband is reachable even when we're in Europe) is concerning,
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ChiSandy, you are very knowledgeable and I can't tell you how much I appreciate you conversing with me on the subject. I will push for an MRI to be done, but I don't see my surgeon again till the day of the next surgery.
A stupid question: if the cancer is not found in the sentinel lymph node it's likely not anywhere else in my body?
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Highly unlikely for cells to make it past a "clear" sentinel node. But that's why they do adjuvant (post-op) treatment to make sure that anything they didn't find during surgery has a chance to get into the lymph or circulatory systems.
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What's better than finding over $80 worth of Macy's gift cards in a drawer? Trying on pants at Macy's and realizing that you need to drop from a 2X to a 14~!! Took me 2 hours, but I walked away with bunch of pants and tops that actually FIT.
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Poodles, that is AWESOME!! I'm so happy. Congrats on the weight loss and the gift cards!!! Lucky girl!
HUGS!
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I'm curious as to how long your breast surgeon followed you after your lumpectomy? My first lumpectomy was in mid-July last year followed a second lumpectomy a couple of weeks later related to DCIS in the tumor margin. I developed a seroma and, when that was drained, a nasty infection that delayed chemo until October of last year.
The surgeon has seen my mammogram, which disclosed no issues. I had 67 medical visits last year and have paid a catastrophic out-of-pocket co-pay two years in a row plus still have treatment for lymphedema & neuropathy ahead so don't want any medical visits that aren't absolutely essential in 2018.
What's the typical time to discharge? ( I'll be followed by my medical oncologist for 10 years.) Thanks for any input you can provide.
Lyn
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Lyn, if I had stayed in Michigan, rather than moving to Spokane, I'd have been with my BS forever and that would have been great. She ordered my mammograms. I also saw my MO regularly. Now I see only my new MO and he's fantastic. Luckily, my Medicare F Plan covered all my doctor visits and everything else. I certainly didn't have as many doctor visits as you but your chemo probably necessitated some of them.
HUGS!
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I found a lump July 31st and found out it was cancer September 18th. They didn't do a biopsy (told me it was most likely a papilloma and even if a biopsy came back clean the pathologist would want the whole thing so no need to waste time/money, so wish I would have pushed it!!) so it took two more surgeries to get clear margins. I am set for 4 weeks of radiation and the radiation oncologist is ready to rock and roll. I am BRACA 1/2 negative (along with 18 other mutations) HER2 negative, and estrogen/progesterone positive.
So my oncotype came back at 21. I am 39, oncologist says chemo is up to me. She said right now at 14% chance of recurrence, add chemo and it may go to 10%. Will also do 5 years of tamoxifen, she says if we up it to 10 I could reduce the 14% by a few points.
Thoughts?? I really don't want to do chemo but am young and don't want this to come back. I kind of feel like I should keep the chemo in my back pocket in case I really need it (metastasis later on).
Final note, my best friend/soul mate passed away this June after 6 plus years of stage 3C ovarian cancer. I experienced her journey and know that I need to do my research and be my own advocate.
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Welcome, Hydrogirl. We're sorry that you're here, but we're glad you've found our community and hope it can be a source of support for you. We're so sorry to hear about your friend, and we agree completely about being your own advocate!
The Mods
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So sorry for the loss of your best friend & soulmate ("BFF" sounds so superficial), especially to ovarian cancer.
I'd suggest you ask for a MammaPrint or Prosigna genomic test, which are designed to help narrow down the choice of chemo vs no chemo for tumors scoring intermediate on OncotypeDX. (21 is low-intermediate). Unlike Oncotype, there is no "intermediate" category for those two tests--just "high-risk" or "low-risk." Don't have the citation at my fingertips, but there was a recent study showing that those two tests were reliable risk indicators for tumors with good clinical features but low-intermediate Oncotype scores--further reducing the number of patients given chemo who wouldn't have needed it if they hadn't gotten those tests.
There are women here with the same Oncotype as yours for whom those tests helped them decide--one opted for chemo and another came back "low-risk" and went straight to rads and anti-hormonals. Your tumor's clinical features (mucinous, small size, stage IA, Luminal A, intermediate grade) are encouraging; though you are young, which tends to make tumors with the same features more aggressive than in postmenopausal patients, one size does not fit all and you might be better advised to do radiation and anti-hormonals. You would start with Tamoxifen until your ovaries stop functioning (either from menopause, surgery, or suppressant medications), and then switch to an aromatase inhibitor--my MO says that the recurrence percentage predictions on the Oncotype DX test reports do not take AIs into effect, but that AIs can shave at least 1-2% off that even without chemo.
But your youth also means that you would be in better physical shape to withstand chemo; and whichever route you choose, you have a statistically longer life ahead of you than those of us diagnosed after middle-age.
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Mustlovepoodles,I went to my surgeon today & I have to have re-excisionTuesday.Hope for clear margins & no more surgery.
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How much time did you take off from work for a lumpectomy?
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LeAnn3 - I had my lumpectomy on a Tuesday. I had requested only Tuesday and Wednesday off. I did work on Thursday but it was obvious that I needed another day, so I also ended up taking Friday. If I had to do it over again, I would try to schedule for a Wednesday or Thursday and take the rest of the week off.
I hope it goes well for you.
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I had my lumpectomy in June, re excision July 3. I have 7 chemos left to do. My lumpectomy scar is really tucked away under my breast. It has always felt rough. I was looking at it the other day and noticed a few skin colored bumps close to incision and one on top. They don'thurt or seem to be growing or multiplying. If I research this on non cancer sites, it seems pretty common for scars to do this, usually related to dissolvable stitches. I see my MO next wweek, but has anyone else had this? Th
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Thank you ChiSandy!
Losing Hannah has been the most difficult thing I have had to do in my life. She was 40 with two young children, Always positive though, she was beyond amazing. I was gifted of 20 plus years of the most amazing friendship, impossible to think of spending the rest of my life without her. She was up against an impossible beast. I am so grateful to have found this so early and to have the luxury of a cancer type that is so well researched and funded.
The big thing I keep telling myself right now is that I know I am so anxious to get this treated but I wish Hannah had gone to Mayo for a second opinion before her first surgery. I think she might still be around had she started there. She had approx 1 year of NED after her first debulking and chemo. After that it was always there and she was always finding trials and doctors who would try new things. She fought non-stop for those 6 years. I am not trying to put her first doctor down, the treatment team was just so much more comprehensive at Mayo for her second debulking and treatment. She of course got to a point where her Mayo oncologist couldn't help her with the treatments she wanted and she found an amazing set of doctors in NYC who gave her another 1.5 years of life.
So, I really appreciate the thoughts on the other two tests. I feel like I need to gather all information now and make a good decision and not just knee jerk because I am anxious about starting the treatment. I put in a call to my radiation oncologist to ask her thoughts on delaying another few weeks while I have other tests run. My gut feeling is that I am going to say no to chemo, but I am not comfortable making that call today.
Thanks again, I really appreciate your insight!
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LeAnn3,
My first surgery was an excisional biopsy, had it on a Wednesday and they told me to take Thursday off. I was back to work on Friday. When that came back as cancer they scheduled a partial mastectomy/sentinel node biopsy and told me to take 2 weeks off because of the second incision site and my body being tired from two surgeries in two weeks. I had to have one additional partial mastectomy for one margin and they wanted me to take off another two weeks but I only took one because I was climbing the walls. I agree with the earlier response, if you can schedule it towards the end of the week do that to give yourself more time. Everyone reacts differently. My 1st and 3rd had lighter sedation so I was fine but the second more involved was deeper and I was nauseous and out of it for a few days after.
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My surgery was on a Thursday and I was back to my regular daily routine by Monday. But I was already retired from law practice by then. Two weeks plus a day post-op I was back to performing (90 mi. away, solodriving up & back same evening) but with others at either end carrying instruments & equipment.
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