Lumpectomy Lounge....let's talk!
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I received my pathology report late this afternoon from surgeon. They now consider the cancer a grade 3 instead of grade 2. Is it common for the grade to change post-surgery? It makes logical sense I guess since they have more tumor to test and analyze. The sentinel node also contained a .5 mm micrometastases so it seems I have more waiting to do because they will be doing the Oncotype test on the tumor. I'm starting to think that I will have chemo in my future... My initial meeting with MO is a little less than two weeks away so I think it's time I work on improving my "waiting" skills.
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First, Boston, I fear falling not because “letrozole makes (me) dizzy"—it doesn't. I fear it because even before taking it I was osteopenic (and am not sure whether it has sent me over the line into osteoporosis, nor whether the Zometa and then Prolia kept it from doing that), and I have always had a poor sense of balance. (Inner-ear stuff due to allergies, as well as poor proprioception due to mild sensory-motor integration deficit—which we used to call “being a klutz"). Because one of my dearest long-time friends died a couple of days ago a year and a half after falling and breaking her hip, that's why falling scares me. My trainer is working with me on balance as well as posture, strength and flexibility.
Second, LoungeKat, it is not uncommon for surgical path results to differ from biopsy path results. The most common difference is one of size, but grade and hormone receptor/HER2 status can vary as well. The reason is that the lab has a much bigger sample, and thus a truer picture of your actual tumor, from the tumor once it's been removed than from a core-needle biopsy. .5mm is less than the size of the period at the end of this sentence. Don't jump to conclusions until you get your OncotypeDX results back.
And Hailey, the fact that you are only 30 does change things a lot. Breast cancer is more aggressive the younger you are, but you are also in better physical shape to endure chemo. Recurrence and survival curves are much more crucial when you consider how much of your life expectancy would statistically remain had you not had cancer. 12% recurrence chance is less serious for a 66-year old like me than for a 30-year old like you. Glad you're getting the OncotypeDX test. 10 is “low-risk" according to GenomicHealth, the test's mfr.; but studies thus far that are based on women scoring “low-risk" (10 is squarely within "low-risk," which runs from 0-17) examined only postmenopausal women.
Have you considered egg-harvesting or even IVF/freezing embryos for later implantation (in your own or a surrogate's uterus) after cancer treatment is over? Or would the hormones one must take in order to increase egg production or boost the eggs’ affinity for sperm cause your tumor cells to grow?
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Hailey, I am grade 2 stage 2b, 2 positive nodes and extensive lvi. My oncotype Dx was 13. I avoided chemo. I got a second opinion because the lvi scared me. Second opinion didn't recommend chemo either. However I was 54 you are only 30. I think at your age I would seriously consider chemo or at least a second opinion.
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Hi everyone!
I am scheduled for a lumpectomy 6/15. I was very confident with this choice and both Surgeons I met with recommended this. I am at a great cancer center. So why a week out am so suddenly so unsure? Is this normal? The thought of a mastectomy or adouble mastectomy really scared me and seemed over the top, but now I'm seeing so many women , smart women, making this choice. Anyone else go through this?
Thanks
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I've been off here for a couple of days, and now I am way behind.
Hailey, I am not familiar with LVI, but I am getting my port in today for chemo to start next Friday. They originally thought my stage was 1a, but I'm a 3a post surgery and pathology. It was a shock, but my grade is 2, and I had 6/7 positive lymph nodes. I really don't have a choice, as I tell my husband, if I want to live long and have the best chance to knock this out. So, while I am so disappointed in how my early expected stage changed, I want to live to be 118 (a long-time joke), so I am going to do what I must. Perhaps a second opinion would ease your mind? All I know is while chemo will not be fun, it will be doable.
Robin, As Sandy suggested, my dentist gave me some Biotene this week for my last cleaning until after chemo is over. I plan to use it while during chemo, and later Rads. I might even start this week, prior to chemo beginning.
VL, When we realized my tumor was 3x the original size thought, my surgeon still had confidence that she could get clear margins removing it via LX. I am happy 3 weeks out I did this, ESPECIALLY now that I have to have chemo, more lymph node surgery and rads. One thing at a time. I feel like it has slowed me down only modestly (praise God), though I'm not throwing javelins or any such thing. Yes, sleeping has had its challenges for maximum comfort, and there are zapping pains here/there, and I hold my boob sometimes when the dog wants to run out of the yard... But, I am living with cancer, and I am grateful for all this is not, and this is much more than I originally thought. I think the earliest part of this, and mind you my diagnosis was just on 5/4, is the hardest part. The shock of just being told you have BC. Then it going from the best case scenario to a much more difficult scenario. Only six weeks in, I am calmer in many ways than those first few days. Even going into surgery I was calmer than expected. I pray the same for you and that you get all the understanding you need about what is best for you for the long term.
Am I normal? (HA, I know the answer to that.) I am only 3 weeks today post surgery. Scarring is healing great. Some things I notice, the right nipple is quite senstive and still quite numb. Also, and I have been very leary to feel around. There seem to be quite a few hard spots, one under my nipple, though the tumor was above. I'm just wondering if it is still just swollen, which I expect it is. Also, the SNB scar has some hardness under as well. I'm not panicky, just wondering if this resonates with others.
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CC, Hang in there! You've overcome so much! It is going to be ok. I'm sorry the wait will be longer that you'd like. I personally don't like waiting either. Big hugs!!
LoungeKat, I would assume it is not uncommon for things to change, as mine did. At first I was expected to get just rads but then after pathology everything changed. What I have learned from cancer, having gone through the journey with my first husband, is it is a like riding a wave - of emotion, change. Please don't expect the worse, just think of it like now they know exactly what they are dealing with and so XYZ is the best option to treat this effectively and get it out of your system. I pray that you will try not to dwell on it every moment, but be prepared and know you can handle anything that may come your way. We are with you!
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Why is my surgery information not showing up in my footnotes? It is saved in my profile. ?? #technicallychallenged
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CC2016 - If the demons are truly working on you and the logic of waiting for another doc appt. is not enough. Have you considered to see if you can get an appointment from a cancelation? And if you do call to do this, express the anxiety you are feeling, who knows they may just squeeze you in without a cancellation. I'm sorry I have no experience to offer as I have just finished my treatment and am still healing. My gut tells me it is natural to have lumps after surgery and in particular if it is near your incision. But certainly understand you need some reassurance. I don't know your history with your docs but definitely you need to have someone that you feel confident with. That relationship is important. And sadly once diagnosed with cancer, none of us "will be done with all this". There will be a constant watch in all our lives. I've just finished my treatment but have read many women speak of the anxiety of their followup exams. So I offer this suggestion in how I am personally plan on handling that thought of the next mammogram and tests thereafter. And I mean no disrespect to anyone if they feel as though I am minimalizing this. But I refuse cancer to define me. And so what I've concluded is that my cancer followups the rest of my life are to be my maintenance plan. And basically what that means is that I view it like all other health issues I have. I have hypothyroidism. I have to be monitored and take medication the rest of my life for it. I have an occasional CT done, lab work twice a year. My followups with cancer are just that. I will treat it as if it is a maintenance health issue. It may be early for you to think that way as you may not have other health issues to relate this to. If the demons are that bad as they sounded on your post, please call to see if you can get in on a cancellation. No need in stressing yourself out any longer then needed. Meanwhile, all of us are here for you.
BostonTerri - sugars and diet is my next plan of action. I have to take care of me.
LoungeKat - hope your Onco comes back low. They told me it would be two weeks for report. I got my report in 6 days. I insisted I have a report sent to me directly.
VL22 - Your, 1cm, Grade 1, ER+/PR+, HER2- is what I had. Your cancer is small and is the type that can be treated with medicine. The smart women you speak of may have had larger and different types of cancer. There are ALOT of things to review when determining how to proceed and/or if a mastectomy is warranted. From what you shared, I would tell you what my oncologist told me. I have the best cancer you can have. (some may take offense to that statement as no cancer is good) It would appear your docs have your lined up for what is best for you, with what they know now. That's the best any of us can ask.
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Jo, Lurking is just fine! Glad you're still here.
Hailey, I'm with Sandy, investigate having your eggs harvested. There seem to be a lot of options now for young women going through chemo that weren't present even a few years ago.
VL22, Welcome to the best lounge on BCO! On having a lumpectomy vs mastectomy, I think you will find here that most women are very glad they went with a lumpectomy (even if they found a mastectomy necessary later on). Less is more and usually the prognosis is the same. Once a breast is removed it is truly gone and no amount of reconstruction will replace it. Start "small." Have the lumpectomy. If the path reports or genetic testing indicate otherwise, you can still have a mastectomy.
Kim, to get your surgery information to show, you have to go to SETTINGS on your profile page and make it PUBLIC. It's such a convoluted system. You'd think that you could do it where you enter your information.
Thinking of all you just starting your BC journey. You will find the people and information here to make it tolerable. And make lasting friendships.
HUGS!
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gardennerd I like the way you think! I had uterine cancer in January 2016. I never worried about the FU appointment until I was diagnosed with BC this February I had a FU with my GYN oncologist after finishing my BC radiation and almost had a panic attack. I have dread the fact that I will have to have a mammogram a year after BC. But, I'm going to try to think of it as well care check up. Two cancer diagnoses in 13 months is all anyone can have! Right?
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Hello, everyone
New to all of this, although it seems like forever, in some ways. Went to see the BS assistant, yesterday, and she was very pleased with how my incisions are healing. I am awaiting the results of my oncotype testing, to see if I will need chemo. If not, then we proceed with radiation. I just wanted to say hello. It's so nice to have found all of you... my husband is very supportive, but it's still a very lonely place to be. I am a 52 year old mother of 3 (20, 12, and 8), with 4 foster children also in my home. I try so hard to just be "normal", for them and for me, but....you ladies KNOW how it is. I am not happy to be here, but am happy to have found a supportive place to be "real". Shawna
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I, too, was told I had the 'best' kind of cancer. At first, I thought... what?! Cancer is cancer; there is no good kind. But I think my docs were trying to tell me it would be easy to treat. I was diagnosed with DCIS & IDC. I was told that it was likely the cancer was taken out with my biopsies because they were so very small-3mm for both.
My BS discussed the pathology report in detail, 8 days after my surgery. She told me the margins were clear and she took extra to be sure, the duct with DCIS was completely plugged with cells and she found & removed 6mm that had not been seen on mammogram or biopsy. She also removed 5 lymph nodes because the IDC was so close to the armpit.
I had 35 radiation treatments-10 were boosts and am now on Letrozole. My Oncotype Dx is 11, which I am told is low risk, though I don't really understand all that because it seems to be based on women who would be taking Tamoxifen, which my MO says wouldn't help me. Maybe I am not understanding how the genetic testing works.
All of my doctors talked about 98-99% success rates regarding removal of the cancer(s), but none have ever said I was cured. The RO was the most open about all of this. He told me there was a small chance the cancer would come back in the "affected" breast and an equal chance I would develop cancer in the other breast. As I age, those chances go up.
I try to look at all of this as maintenance, too. I have to see my PCP every six months for high blood pressure, low thyroid and cholesterol, so an annual mammogram is no problem because I have been doing that for more than 20 years anyway. I will try to keep myself upbeat because I have no control over what my body may or may not do where the cancer is concerned, I will continue to keep my doctor appointments and I will take care of myself with walking and watching what I eat. I think that is about all I can do!
This is a long road and I intend to enjoy the walk and the sights along the way. If there are detours, I will assess them as they arise. I have a good support system in my husband and son, my friends and my health care professionals. And, of course, everyone here. Thank you, ladies! I can't ask for anything more.
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Boston, I can understand why you might dread your first mammogram next year. It is still one of the best defenses we have at catching BC early. Mine wasn't at all uncomfortable and I've been having them for about 30 years.
Velvet, sorry to say that you will likely never hear the word "cure" regarding your BC. The best we can hope for is NED (No Evidence of Disease). While Tamoxifen is used to determine recurrence rates, apparently AIs follow the same pattern. Oncotype isn't exactly genetic testing. It studies the replication of cancer cells and other things. Genetic testing shows if you have GENES that pre-dispose you to certain cancers. BRCA1 and BRCA2 are some examples. There really isn't a definitive way to test whether our BC has come back, if it will never come back, right now.
HUGS!
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KB, great news!
HUGS!
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Hello everyone. I had lumpectomy and SNB on Wednesday. Actually felt better yesterday than I do today- but I know every day I will feel less pain. Thankfully my SNB was clean- so that was a blessing. I'm now waiting to hear about the margins. I was told to call today, which I did, but results are not back yet...it's hard to wait for anything! If margins are good I am on track for the Brachytherapy...keeping my fingers crossed. I learn so much from reading your posts. Thank you!
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I knew I didn't understand the difference between the oncotype & genetic testing. Thanks for explaining, Peggy.
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OncotypeDX is genomic, not genetic, testing. Genetic testing (after counseling) tests the patient for evidence of genetic mutations and other genetic factors (not just in b.c., but sometimes in pregnancy to determine if there is a serious problem with the fetus; and for certain harbingers of other diseases as well, most famously Huntington's). Genomic testing (not just OncotypeDX but also Mammaprint & Prosigna) tests a sample of a tumor for expressions of 21 or more specific genes in the tumor, that would predict the degree of risk of recurrence at various points in time and (via various online tools) extrapolate projected length of overall survival. The reason that Tamoxifen is used as the baseline predictor is that at the time the test was devised and while data were being gathered & correlated, AIs were not yet commonly in use. When your MO tells you your score, shows you the graphs of predicted risk with Tamoxifen with or w/o chemo, but then tells you how much lower your risk would be on an AI instead, (s)he is basing her predictions on having read journal articles and keeping up with the latest research in breast oncology. I would not at all be surprised if GenomicHealth soon adds AIs to their survival-curve graphs.
And if two surgeons are recommending lumpectomy rather than UMX or BMX, that ought to tell you something. Not only are you under general anesthesia much longer during mastectomy, there is a greater risk of complications and you will at the very least have to deal with drains and a longer recovery. Not just that—because mastectomy is a longer and more extensive surgery, it is also more expensive (whether or not you personally have a co-pay). Therefore, surgeons get paid more for mastectomies than for lumpectomies—and if two surgeons are recommending a surgery that would pay them less money and is therefore against their own financial interests, they truly do have your best interests at heart.
Recurrence, whether ipsilateral (same breast) or contralateral, rates do differ with the degree of surgery—but we're still talking a single-digit difference, with an absolute risk difference that is even less significant. “Peace of mind?" Not having to get mammograms doesn't mean no followup imaging, further procedures, nor followup visits. It also doesn't necessarily follow that radiation is never necessary after a mastectomy, because some tissue always remains. If after lumpectomy, further surgery is necessary down the road, it can always be done. But a mastectomy is forever, even if reconstruction is possible. When a breast is gone, it's gone, and even the most skillful reconstruction will not result in a sexually-functioning breast for you, no matter what it might feel like to your partner.
IMHO, many “smart women" are being sold a bill of goods. Peace of mind is an illusion—once you have had breast cancer, you remain on alert all the rest of your days, no matter how minimal or extensive the treatment. The only medically valid reason for BMX is an elevated risk of recurrence based either on age (the younger, the more aggressive the cancer), strong family history, or confirmed genetic mutation. Everything else is psychological, and many women find that what they thought would be more comforting is not so.
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Barbmak, glad your surgery went well. I don't know why they tell us 2-3 days, when in reality, it can take up to a week, sometimes longer, depending on how busy the lab is. Keeping you in my prayers for the best outcome.
KB870: Yayyyyyyyy for your good news!
Velvet: My surgeon was a bit more bold...he said the cancer was gone, but I had to go back to get more of the DCIS out. He doesn't consider it cancer. I have read a lot about it, and I guess there are various thoughts on it. It left me a bit confused. But I'm going with it being gone and the radiation being an "extra" to make sure nothing is left behind. And the AI is preventative medicine so it doesn't come back.
Shawna: Welcome! God bless you for taking on foster children! And I'm sure you're being a great mom. But let the children know you will need help and let them help. :-)
VL22: I'm a minimalist when it comes to surgery. My BS told me that a partial mastectomy was warranted...unfortunately, I had to have it done twice, and I could have had a third, but the BS was sure that radiation would take care of any DCIS left because my margins were "close." I still would not have chosen a mastectomy. If at some point in the future, there is a return of the cancer, then I guess I would have to have one because I read that radiation can only be done once.
Just want to wish everyone a good weekend. I'm still exhausted and will TRY and do some housecleaning, but it's supposed to be in the 90s here, so will undoubtedly be indoors in the a/c whatever I end up doing.
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BarbMark, Welcome! Glad you are doing okay. Keep icing that breast!
Sandy, as always, you clarify the points I was clumsily trying to make. Thank you. You are excellent at explaining things.
No 90s in my future. We'll be lucky to get out of the 60s
HUGS!
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Actually, if Barbmak has pure DCIS, then no chemo is given regardless of hormone-receptor status. DCIS is much likelier to be hormone-negative than is invasive cancer. And they usually don't even bother testing for HER2, since most DCIS expresses it but because it's by nature confined to the ducts and noninvasive, HER2 is irrelevant. Triple-negative DCIS is never given chemo unless path results find some IDC that isn't hormone-positive. When there is a mixture of DCIS and invasive cancer, the latter is what drives diagnosis and treatment decisions.
And for the next couple of days there’ll be delayed-onset muscle soreness (DOMS) from the powerful contraction of the chest-area muscles just before the succinylcholine (given as a paralytic at the start of surgery) kicks in. It’s called scoline syndrome, it’s normal, and it behaves exactly like the DOMS you get after your first strength workout (or after ramping up the difficulty abruptly). It’ll start easing by day 4 post-op.
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Thanks, Sandy. I missed that. Good eye!
BarbMark, sorry I gave you bad information.
HUGS!
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I have read and re-read your post, Sandy. Now I am wondering if I should have had genetic testing. Is it for the BRCR 1 & 2 I have read about? What is the criteria for such testing? This is all so confusing. I am reading Dr. Susan Love's Breast Book and coming up with more questions.
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Velvet, Sandy can answer your question in more detail, However, think about all your family: is breast cancer common? Ovarian cancer? Prostate cancer? Those could be indications that genetic testing might be a good idea. It's always good to have questions - at least you know enough to ask them. When I first started out with BC, I had no clue what I didn't know so I couldn't ask questions to find out what I needed to know. It's tough.
HUGS!
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VelvetPoppy, I had genetic testing because my family is simply rife with cancer. Breast cancer, colon cancer, pancreatic cancer, prostate cancer, thyroid cancer and others. I had an aunt who had breast cancer at age 24 and another at 43. I have a cousin who had male breast cancer. It seemed pretty obvious to everyone that we have something going on in both sides of the family.
Sure enough, genetic testing revealed that I have two rare gene mutations, PALB2 and Chek2, which can cause all those cancers. My children decided to get tested because they had a 50:50 chance of having zero, one, or both. My 30yo son was all negative but my 24yo daughter was positive for both. As upsetting as that is, we take comfort in knowing that
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Happily I forgot all day yesterday that it was the 2nd anniversary of my lumpectomy... yay me :-)
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yay you indeed, Mollie, and congratulations!
MJ
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Congratulations molliefish!
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BC is everywhere! Last week I found out a friend up here had just had an LX three weeks before (she kept it quiet from everyone). And last night another friend told me she had her LX in December and has come out on the other side of rads - now on an AI but she didn't know which one. It was great because she was very encouraging and offered me a ride down to rads when my DH is out of town.
We have survivor sisters all around us!
MJ
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YAY, molliefish!
Thinking of everyone just starting this journey or are in the middle of treatments. Sending prayers and positive energy. Hope you are able to have a relaxing weekend and enjoy the sunshine. Hugs!
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I know there is lung cancer, stomach cancer,liver cancer, bone marrow. All on my mother's side. But no prostate, breast or ovarian cancers, that I am aware of. My father's family seemed to have heart issues, but they were very secretive about things like that. I had a cousin I was very close to pass away last year and his sister won't tell me what happened. I don't even know how my father died, other than he had been sick. My sister knows, but won't say. I have the screwiest family!
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