Lumpectomy Lounge....let's talk!
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Sandi, I'm sorry you're getting hit with all the Zometa SEs. Bubbly is always good. Hope you feel up to eating. Stay hydrated! And definitely hope you feel better NOW!!
HUGS!
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Traci, I think this will answer your questions Oncotype Dx on multiple tumors in breast cancer
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Thanks Molly. If I'm reading the report correctly my recommendation of no chemo wouldn't change. I think.
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That's what I read too
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Traci, that day will come. Honest!
HUGS!
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lmencken, glad you found this site & know that you're not alone.. It's so hard to know what to do & there are so many tests & decisions to be made in a short amount of time.
Kdtheater, YAY! Wonderful news, I'm so happy for you. Hoping that you get a low onco score too!
Dara, you look great in the hat!
Sandy, I'm so sorry for all you've had to go through & now on top of it all have the flu symptoms. It made me so mad to hear how they treated you! If I could have, I would have gladly kicked their #$ for you! Hope you feel better soon!
Poodles, not what you needed on top of everything else you've been dealing with.
I'm with Traci, looking forward to when I don't think about BC. Haven't reached point where I just pop the tamox without thinking about it & if today is the day I get se's from it. I see my MO on Friday for my 6 week tamox follow up. Then about November will be my 1st mammogram since dx. Still have some fatigue, but I think getting better. But still feel very fortunate that it was caught early & thankful for you all!
Hugs!
Trish
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Trish, glad you are doing good. The fatigue continues to ease. Apparently it is a BC SE, not just a rads SE. So much to go through and mental fatigue on top of it. You will likely get to the point where you don't even think about the pill you are taking, it is just one of the bunch we all seem to take (including supplements). I'm there. Like you I'm so thankful it was caught early.
HUGS!
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Dunno if we have any BCO sisters in central Italy (states of Umbria, Abruzzo, Marches, Lazio--which includes Rome, and SW Tuscany), but my prayers are with them that they escaped the quake.
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Sandi, I don't know either but my prayers are with the people in the effected area. That devastation is awful.
HUGS!
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I posted this in Summer 2016 Rads forum also since I am 24/33 treatments today.
I am having shooting pains, "zingers". They seem to have been triggered by radiation since I never felt them before. A few weeks ago I told my doc about them and she said that its normal and the nerves are regenerating. The pains the last couple of days have been on the right side of my breast and my surgical site is on the left.
I am going to ask the doc about this when I go in today but just wondering if anyone else has experienced this?
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Thanks for the lovely hat comments! I think my headache last night was from allergies. My sinuses just ached so after a couple of sudafeds, a zyrtec, and finally 2 Advil (I'm not supposed to take those but got desperate) I finally fell asleep. This morning feel much better.
Traci, My pathology also had the primary IDC and then they found DCIS in the final path. My MO said that it is very common. The biopsy can determine the primary tumor, when they remove it, they frequently find other "debris of DCIS. It makes sense because the IDC originally started out as DCIS until it invaded other tissue. It makes sense that there can be other cancer cells that are in the area, but jet haven't broken out and become invasive. That is just so awesome that your number is zero! Can't get much better than that! These tests are quite specific, especially for those in the low risk and high risk categories. It's just the intermediate scores that they aren't quite sure about. I'm glad that I had the option of an additional test aimed highly at the intermediate score results.
Sandy, hope you are feeling better now.
Poodles, don't feel badly. I just got a letter from Medicare with my summary since May 14 with a note that said that I MAY have to pay $2,300 in copays etc! I sure hope that's not the case, but I haven't paid anything with all the treatments and surgeries. I'd rather pay a little each visit if I"m going to have copays!
Off to meet a friend to get a blow torch for my jewelry. Watch out... I may be lethal with a torch!!!
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Dara... Blow torch? Sounds fun!
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Poodles - that is so horrible! And one of my biggest fears! I keep waiting to get all the bills from my 3 different consults - as I fear insurance won't be all of them. But that is nothing compared to what you are going through!
Dara - I LOVE your new profile pic. You are so beautiful! I can only hope to look that good with no hair!!
Tsoebbin - I had a very similar lx surgery as you, with nodes and margins negative (thankfully!). For some reason my Her2 is pending on one of the masses (although before surgery they were both Her2 negative). Once that comes in - then I go for oncotype testing. I assumed I would have just one score...but you bring up a good question that I am going to email my breast surgeon about right now (she is SUPER responsive with any email question I have).
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Dara, do you have a Medicare Part B supplement, or just straight Medicare A & B? If the former, I wouldn’t panic over that co-pay figure on your “Explanation of Benefits” section, because it’s not a bill, and the providers usually end up accepting what Medicare & your supplement carrier will pay. If you get an actual bill for that, and it gives a low figure or zero for “amount your insurance paid,” call the billing office and ask where in the Medicare billing process they are. This happened to me a couple of times when I had regular insurance pre-Medicare, and each time the provider’s office said to wait till the next billing cycle--at which point my co-pay was listed as either zero or something quite negligible.
Fever is down. Taking care of headache with coffee. Actually got a full 8 hrs of sleep--probably the Lyrica, which kept enough of the “cattle prods” at bay that I could sleep. My hand paresthesias are gone too (first time in quite a while). Chest & back muscles still stiff & sore, so I took my Arthritis Tylenol (1300 mg.) this morning. My MO’s nurse called this morning and said I should keep Tylenol under 3000 mg./day, so I should take the Tylenol only twice a day. She says I can take one of the Lyrica in early evening so long as I’m not going to drive or drink alcohol. (I deliberately planned the Zometa so that I have four uninterrupted days to do utterly nothing, so if I have to go anywhere, it’ll be on foot or via Uber, or else I’m staying put). As to the fever, if it spikes above 100.5 in between Tylenol doses, I should call her office. She says it’s definitely the Zometa and not a cold or flu. Sinus congestion, but we’re deep into hay fever season and the mold count spikes after every rain. She says I can ride this out and should be back to normal by the weekend. But at my MO followup we will discuss the next Zometa, and she will once again appeal to my Part D carrier--citing fragile veins that make IVs difficult, as well as my severe reaction--to cover Prolia instead. Fingers crossed. If we win >$30,000 in the lottery, of course, that’d cover the 3 years of Prolia out-of-pocket.
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No time, crazy busy at work but wanted to let you know I got sleep last night! Real, deep sleep for at least 4 hours!!!!
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Sleep is wonderful, Molly! Sometimes when I’m exhausted (like after coming home from an appointment after a sleepless night, a long drive or a red-eye flight to Europe or from the W. Coast) and my schedule is clear for several hours I take a nap--and it feels like I’m drinking great gulping draughts of sleep. Incredibly decadent, but satisfying.
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Hi ladies, need to stop by and ask some more questions for those of you who have BTDT
I am having whole breast/axillary/clavicle radiation. So, I guess as much as you can get done? Anything I can do to prepare my skin for it before I start radiation? They are prescribing and gave me a sample of radiaplex. Any feedback on that gel?
I asked how my scars are healing up and she said that it does not appear so far that I have a seroma, but that the bottom of breast skin looks like it has thickened trying to get back to normal. I am not sure what this means?
I will be out of town 2 days during my treatment (during week days). Does this cause problems? Anyone else ever miss a radiation day?
My 1st tattoos ever today (4 tiny dots). None of them are actually on my breast which I thought they would be. Where are yours if you got the tattoo dots?
I'm sure more questions to come. Thankful for this LX lounge
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I found out yesterday that I needed a Lumpectomy followed by Rads and Hormonal therapy. I guess Chemo is not out of the question but is being put aside unless information gathered from the Lumpectomy and the Sentinel node testing/removal. It was suggested that I check in here. I started to read some of the posts and quickly became overwhelmed by how many posts there are... So for now... I'm am mentally giving myself a pat on the back for checking. There is so much information i want to understand but just don't.
- T.m.I for my brain.... nervous... overwhelmed and trying to slow down long enough to comprehend.
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Ayr1016, My tats were all just below my breasts, vaguely where my bra band is, maybe a bit lower. I had one in the center and one on each side of my body. They barely show. Postponing a couple days shouldn't be a problem. I didn't do anything for my skin until about #17 treatment when I had "punctation" - little red dots that barely showed on my breast. Then I used Aquaphor.
Miles, there's nothing harder than starting out on this journey. You don't know what you don't know. I recommend you get Dr Susan Love's Breast Book. It gives you a comprehensive look at breast cancer and treatments. Tons of information. You are right, you generally don't know until after surgery if you need chemo. If you haven't had a biopsy that tells you the ER/PR and HER2 status, then you will find out from your path report. It is easy to become overwhelmed. Read Dr Love's book as well as following along here. You will find a wide range of BC experiences and treatments. And ASK QUESTIONS!! We will gladly answer each of them. We are here for you and to support you! (BTW, we'd love to know where you are located - I'm sure we have BCO gals near you).
HUGs!
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Hi, I was diagnosed in June 2016 with dcis. I had a lumpectomy on 7/26. My surgeon said I could do radiation, tamoxifen or watch and wait. There was no invasion in my path report and she said I was low to intermediate grade. I decided to do the oncotype test which came back today. My score was 60 with 14% risk of invasion. Apparently, that means I have a 24% chance of recurrence of either DCIS or invasive BC. Not quite sure what the 14% means. I have very dense breast tissue and am a small B cup. All my doctor when she called with the oncotype score was that I could decide my own treatment or non treatment. She doesn't really give a recommendation. I don't know what to do. I'm 52 and I have a clotting disorder so I would have to take another type of hormone blocker. Anyone with a similar story or advice? Thanks!!
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Welcome, Miles. Did you get any information from your biopsy other than “IDC?” Usually, the biopsy path report includes hormone-receptor and HER2-expression status and grade (anything regarding tumor size is a guesstimate--sometimes the actual tumor turns out to be larger or in rare cases, smaller because the biopsy removed a significant portion of it). When you say “rads” and “hormonal therapy” but “chemo is out of the question,” your tumor probably has favorable characteristics--small size, ER+/PR+, probably HER2-, Grade 1 or 2. You are correct that you can’t know for sure until surgery reveals its exact size (and clear margins) and how many lymph nodes--if any--were involved. If you are node-negative, Grade 1 or 2, and your tumor turns out to be small enough (<1 cm), there would be no need to order an OncotypeDX test to determine the need for chemo, because that need would not exist. If >2cm, with more than 3 positive nodes, it’s more than likely you’d be a candidate for chemo and again, no reason for OncotypeDX. If in-between, then OncotypeDX will be ordered--a sample of your already-removed tumor would be sent out for testing, which takes 10-14 days. Those results would help you and your MO (medical oncologist) decide on whether to do chemo. If your tumor falls into that “gray area” your age might be the deciding factor: the younger you are, the longer a potential lifespan you have ahead of you to protect, and the more aggressive a tumor tends to be. If you are past menopause, that might work in your favor.
You generally meet with your MO soon after your surgery (usually, right after your surgical pathology report), and your RO (radiation oncologist) after you've healed from your surgery. If you get chemo, it will usually be before radiation.
Lumpectomy isn't a walk in the park--but it's a same-day ambulatory surgery with very little pain or fatigue afterward. Most often, you might get prescription pain meds in the recovery room, maybe another dose before being discharged (I didn't--all I got were two regular, not extra-strength, Tylenol!), a drink and a "nosh" and usually a prescription to fill and take only if you need it. I didn't even get a prescription. I managed just fine with Tylenol and ice packs. You almost certainly would not have drains to deal with. We're usually told to expect profound fatigue and if you have to climb stairs to your bedroom, consider setting up a downstairs sleeping area. I did...and it turns out I didn't need it, nor the button-front tops. (But most women have some difficulty pulling stuff on over their heads post-op).
But let’s concentrate on what is within your control and you can do right now. First, get a looseleaf binder with pocketed dividers: you are about to accumulate reams of paper, and you need to organize it. (Doing that might distract you from worries). Right now, I would also start to make sure you have enough tops and sleepwear (and non-wired bras if you're big enough) that you can either step into or that button or zip up the front. Also, make sure everything is in order insurance-wise. Check that not only the hospital and your doctors are in-network, but so are the radiologist, anesthesiologist, etc. Then decide who you do and don’t want to tell about your diagnosis & treatment. Some people set up a CaringBridge page to post updates and avoid either sending tons of e-mails or divulging too much info on Facebook. It’s free, and can act as a blog or diary too. If you don’t go the CaringBridge route, keep a blog or diary (even pen & paper) anyway, so that you can revisit it later and be encouraged as to how far you’ve come. If you’re the kind of person who listens to doctors in a sort of a fog (as we all do at the beginning of this journey), insist on being sent home with a printed after-visit summary (or having it sent to your inbox in your health system’s patient portal website, if there is one). Take notes--or ask your doctors if you can record the audio of the visit on your smartphone--that way, if you aren’t sure later what you were told, you can go back and check.
You might want to get a copy--physical or e-reader--of Dr. Susan Love’s Breast Book, or the similar but shorter one by Dr. Elisa Port. Both are highly respected breast cancer surgeons (and Love is a survivor herself). If you are concerned about anything, consult those books--don’t Google. “Dr. Google” is an idiot--he has no filter and lists the valid links co-equal with the wacko quackery. This site is a great repository of scholarly articles as well as information written for us as lay patients. Sort of one-stop shopping!
We can all advise you far more effectively & helpfully if you give us the whole picture by making all your diagnostic information public (by “public,” we mean to ONLY the readers of this board, who must have an account and log in). You can do this from your profile page (“My Diagnoses” and “My Treatments”) and click on the symbol next to each diagnosis & treatment to either make it “public” or hide it from view. This is the toughest time--except perhaps waiting for initial biopsy results--because you’ve been socked in the gut with a cancer diagnosis but have yet to be told enough to explore your options and start a treatment plan. Once you know more about your tumor, you can have a clearer picture of what’s ahead and you will shift into “action mode.”
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I totally understand what you mean by TMI. Its overwhelming to have to make a decision when there is sooooo much information.
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Oh, and Ayr, no need to prepare your skin before rads, other than to come into each session with clean skin and no antiperspirant or deodorant. Apply whatever they tell you to use immediately afterward (in the locker room) and at night. Your skin may look as if it’s sunburned, but remember that it's the external manifestation of what’s going on inside--the “burn” is more from the inside out. The thickening of the skin post-op is scarring, which is a reaction to injury. (Your body can’t tell the difference between being slashed with a knife or carefully cut with a scalpel: they are both “injuries” and your tissues will act accordingly).
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Just popping in to say Hi and catch up.
The caregiving that many of you are doing is both hard and at times heartbreaking. There are also some very touching moments. I hope you each experience those. Please be kind to yourselves and ask for help so you can get some rest.
Dara Love the hat!
Sandy hope you feel better soon.
Peggy have a good time at coffee. Hopefully no flip phone in sight!
Welcome to the new folks and hi to everyone else
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JustMe, with an Oncotype score of 60, there should be no doubt that chemo is called for. That's a really high score. For me (and not necessarily what YOU would do), I would throw everything possible at the BC. Your MO should be giving you a bit more guidance, I would think. Please help us help you by filling out your profile and making it all public. We have a hard time remembering all the details and they matter when giving you answers. From what you wrote, it is rather surprising that your Oncotype was so high (at least to me). You might want to get a 2nd opinion from another MO.
Other gals will chime in with their experiences.
HUGS!
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Miles and Justme - I totally know what you mean about this board being overwhelming. I started reading the posts from the beginning, and just gave up and jumped to the end. As I soon found out - everyone on here is fine with rewriting words of support or advice, even if they posted it earlier, I jumped right in with my questions. So don't worry about that. I still consider myself the newbie on this board.
I was basically told they thought it was cancer on 7/19 when they did 2 biopsies on my right breast, but got the final word on 7/20 for sure. But then the WAIT! The wait is one of the worst things about cancer - and it plays horrible things on your mind and positive thinking. I have determined that cancer is not for impatient people (which I am). I didn't find out about my PR/ER and HER2 (which were all odd abbreviations that I had NO clue what folks were talking about) until several days later. Those days were the worst. Blur, tears, anger, denial, and determination to get both boobs chopped off as soon as I could get in to see a doc. But of course, no one would see me - until my full pathology report was complete. I wound up getting three different consults. I am in Michigan - and luckily there are several major cancer centers somewhat near me. I only knew I didn't want to use the hospital/center that did my mammo/biopsy (previous experience with oncologists due to my father's cancer). I took a couple of days off from work to get organized and then I just took the bull by the reins - and started checking out things. As one friend told me - when it comes to your health, especially in a situation like cancer...get the best doctor you can. While I was super eager to get my tatas off of me, I am so glad I took the time (about 2 weeks) to visit with 3 different doctors/centers, as I ADORE my breast surgeon and her entire cancer team.
I am also so glad I found this discussion board - even when I was still debating what surgery to do. My first two consults felt strongly that a double lx would be best, but then I was blown over when the third consult said mastectomy! I shared ALL of that info with this board (and believe me - it was a lot of info), and the core board alumni were so gracious to read through and give me their thoughts and insights. Quite frankly - I feel like I learn more here than I did in the 9 books I checked out of the library, along w/discussions w/my doctors. The main thing I would encourage you both - is take full control of this in terms of completely understanding everything that you are doing and next steps. If your doctor isn't taking the time to explain things or you don't like their answers in any way - push harder to get stronger answers OR get a different doc. There IS time. Don't feel like you need to rush like I did.
The other wise and sage advice someone on this board shared w/me early on - is set your mind to not have any regrets in your decisions. No matter what. Once you make up your mind about what you are doing (surgery/treatment), then take the bull by the reins and get through it. One.Day.At.A.Time. That is all you can do right now.
Oh - and get a doctor, ANY doctor - to prescribe you some xanax. I only WISH I had it that first couple of weeks of waiting and anxiety of figuring out what to do. I don't use it often - but when my heart and mind are racing with thoughts - I do.
PontiacPeggy (one of those awesome core alumni I mentioned above) - what are the oncotype score ranges? I thought 60 was weird - and wondered if it was really 6 (but they gave her the score before it was formulated accurately or something?). They haven't sent mine out yet, as they are waiting on my Her2 score on one of the masses from surgery. Presurgery - my lumps were both Her2 neg, so hoping it didn't change?? Is that even possible? Either way - they can't send out for the oncotype until they have the Her2 for sure.
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Peggy, oncotype Dx for DCIS is for the decision of radiation or not. Chemo is overkill for DCIS. Justme, I would ask your oncologist for a referral to a radiation oncologist for consultation. The RO is the best person to recommend or not. As for Tamoxifen, are you pre or post menopausal? If you have a clotting disorder Tamoxifen wouldn't be appropriate but an aromatase inhibitor may be. You might consider getting a second opinion if your oncologist hasn't explained what your risks mean.
Ayr, I used calendula cream to soften my skin prior to radiation. It was really dry from two surgeries. I recommendjoining one of the radiation threads and reading through the older ones for good advice. I did find that a cooling towel was helpful and to be sure to tell your team about any problems immediately. My axilla was the hardest hit. You will get through this!!!
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Molly, I bow to your knowledge on DCIS/Oncotype. I felt the score was extremely high. I didn't realize that it was also used for the decision on radiation. I learned something today - thank you.
KDTheatre, Oncotype scores run from 0 to 100. I have a friend here who actually had a zero score. But I don't recall ever hearing of one that was 60.
KDtheatre has it right. Get an oncology team that you TRUST and are comfortable with. You'll be with them for a very long time. And they will be helping you make very serious decisions. Don't let them pooh-pooh you, pat you on the head with "don't worry about it." DO worry about it. It's your body and you need to how your decisions are likely to impact you. One word of advice, especially lumpectomy vs mastectomy: go less if at all possible. In most instances a lumpectomy is really advisable even though we all go through the "cut them off" stage.
And always: When you make a decision, DO NOT LOOK BACK! You made it with the best information available and it felt right to you. That's all anyone can do.
HUGS!
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Peggy, you are correct that 60 is very high. I would do both radiation and hormonal therapy with that score. I can't understand why her MO didn't make a recommendation for both but left it up to her.
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