Lumpectomy Lounge....let's talk!
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Thank you all for your responses. I am doing well and back at work. Feeling thankful. Surgery wasn't as bad as I expected and the IORT, was not near as bad as I expected. Other than a chemical taste and smell for a few days the pain was controlled with Tylenol.
But enough about me, ChiSandy how are you?
Thank you all for your positive encouragement.
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Praying for you CindyNY
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Kalitria-23 I am sorry you are going to have to go back through surgery again. If the recommendation is radiation, if it hasn't been suggested already ask your doctor if you are a candidate for radiation during surgery/IORT. It is less damaging to the heart and lungs since you have cancer in your left breast and the down time is less because you have it all done during surgery instead of daily over a period of weeks. I had a lumpectomy with IORT 10 days ago. I am waiting on the results of my oncotype DX text, I will take the Hormone blockers also to reduce the risk of the cancer coming back. I too dread the side effects. I have always been active, not quite a martial artist but exercise has been part of my life in one form or another (weight lifting, running, dancing, swimming) and when I first went to the physical therapist I cried all the way home. "you won't be able to do this or that, never this, and no not that" is what I heard. I decided to focus on what I can do after I decided to take this thing one day at a time. I am afraid of lymphedema and re-occurrence but from what I have read exercise is good for us, and yoga is especially great. You sound to me like someone that will take this challenge head on and kick it's ass!
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Calitria, none of us wanted radiation or drugs, yet once we've understood the risk vs. reward we've gone ahead, held our noses, and jumped right in.
For me, I asked my doctors to recommend studies. It's been five years, but if I recall correctly, radiation reduced my chance of recurrence by about 50% and hormonal meds by another 50%. You'll come across studies that indicate the five-year (or longer)mortality rate is quite similar for both, but that do not address the treatments and tests those with recurrence must undergo.
Feel absolutely free to challenge your radiation oncologist and your medical oncologist with direct questions and possibly aggressive questions. Feel free also to schedule more than one information-gathering appointment with either or both, and with your primary care doc as well. What becomes important now is that you understand exactly why these treatments are recommended for you, personally, and why they believe avoiding them is not in your best interest.
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L1994BCS, do you think those vibrations could be palpitations? Especially if you've been drinking more caffeine or feeling stress, your heart can throw off extra, usually harmless, beats that, to me, feel about as you've described.
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ChiSandy is right. If you have side effects from the AI, they can often switch you to another and you might do just fine on it--many women seem to have that experience. I've only been on my AI about 5 days, so I can't really speak from experience, but you might as well try--you can always try to switch or even stop later if it's just impossible. Besides, who knows what they'll come up with in the next couple of years? One thing I guess I keep hearing is that this is your body and your journey. Read, ask questions, explore all of the options, and make your own decision. I certainly will never judge you, but I'd really like you around a good long while!
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macmomma - So you don't feel any SE yet? WHich AI are you taking? I am meeting my Onco tmro to start AI, too.
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Anastrozole generic, 1 mg. I take 50,000 IU Vit d3 per week, magnesium, K2, pilates every day, and every other vitamin anyone recommends! I will say that I was feeling a little bloated and like my fingers were stiff for a couple of days, and I had trouble sleeping, but I had a really traumatic biopsy and this whole left side is swollen and very painful, so I was thinking that might have been the cause. When I switched from taking the anastrozole from bedtime to 5:00 pm last night, I slept much better and don't feel stiff at all this morning. I kind of assumed that it would be at least a few weeks before the side effects kicked in, though.
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Thanks, everyone! My R arm is a bit better and my L wrist has gotten used to being “in jail,” so I’m sort of in a holding pattern. Had holed up & hunkered down in my A/C-cooled house these past few days because of both the extreme heat and the need to complete my biennial 30 hrs. of mandatory continuing legal education courses by midnight.
I hear you on the “no more this, never again that.” On the BoneSmart forum, the moderator (a veteran orthopedic surgery nurse) said my fears I might not regain my full ability to play guitar are justified—residual soreness & stiffness can be permanent and limit ROM. But if I do nothing, change “might not” and “can be” to definite “won’t” be able and “will” be permanent
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L1994BCS,
I had a lumpectomy in early January. I too had the vibrations. I spoke to my BCS and MO. They could not explain it and never heard of it before. I had a BMX a month later and never experienced it again
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Absolutely, you're right, and I didn't mean to imply that because I'm a doc, I have all the answers--in fact, most of you know lots more about breast cancer than I do. I guess I'm just philosophizing some--so much of medicine in the last 20 years is large meta analyses of huge cohort and population studies, which absolutely have their place and are often groundbreaking. But, most of the big leaps in medical care have come from clinicians thinking outside the box, not from large academic trials. Also, I guess I'm spouting off some. I really hate the thought of going through all of this and still having the high risk of contralateral breast cancer with ILC. Radiation sounds awful, but I guess I was just thinking if I have to do it, can't I at least get some assurance of having a cancer-free contralateral breast? My instinct is screaming at me to get a bilateral mastectomy, but all the "science" tells me that it's unnecessary and doesn't
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kalitria - radiation was a breeze for me. Don’t be afraid. 35 treatments, heart side, but I opted for face down method to avoid my heart area. (I also have heart disease). I made them show me exactly where those beams were going on their computer screen, and they were not near my heart at all! I suppose if you develope a tumor towards the chest, then it might be a problem or risk. Prior to my treatment, I had a serious talk with my radiation oncologist (paid for extra visit) to make sure they would pay attention to any heart exposure. In addition to total beam radiation, I had 8 treatments of Accuboost that focuses only in the area that had the tumor. (Which was once located near my nipple). It was an odd procedure, but easier than full beam that made me feel uneasy by just the huge size of the machine, but no pain whatsoever. No red skin results, more brown like a tan than irritated sun burn. Some dryness, but you just have to use a moisturizer like Aquaphor or aloe gel. I had to use a hydrocortisone prescription cream for a rash that was a bit itchy, but not painful or horrible. You really need to try and kill as many cancer cells lurking around, or your recurrence could be kept high. However, it’s a personal choice, I know. Good luck in whatever you decide
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Hi all,
Just got scheduled for a lumpectomy on 7/26; I've finished my chemo (AC/T) already (I have cancer in my lymph nodes so the hope was that the chemo would make the node surgery easier). good news is the chemo seems to have worked; tumors are smaller, and hopefully me sentinel nodes will be benign. Would love any tips on lumpectomy planning -- I'm due to have radiation as well once I'm recovered from the surgery and then tamoxifen (I'm 46). So many more stages to go, but it's nice to be moving on from chemo. These boards are so wonderful to read and I really appreciate all the advice and feedback -- I mostly "lurk" but with surgery coming up, I wanted to post myself -- happy 4th of July and hope everyone is feeling OK.
best,
Diane (ER+, PR+, HER2-, stage 2a)
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Hi ladies,
I'm sure like a lot of you here, I have searched and searched the internet, and read as many forums and posts and medical journals that I can possibly find (on top of my breast surgeon's and oncologists actual opinions). I know this probably just causes more stress, but I can't help it. I feel as if there may be something left undone here, in my situation. I realize that my case is nowhere near as bad as most of yours on here, and so I feel kind of silly even posting this, but my worry just doesn't go away.
Long story short, ultrasound of left 12oclock breast suspicious, mammogram suspicious w calcifications, CN biopsy + for ADH. Had lumpectomy after a pre-op MRI showed an 11mm lesion in area I stated. So, they did the wide excision, and my surgeon said she removed only the mass, she did not attempt to get clean margins. That is the first thing that worries me. Secondly, I was not put on a 6 month high-risk imaging schedule. My surgeon gave me an order for an MRI one year from my surgery date (Mar 2018). I keep hearing of cases where women come in 6 months after excisionals, and they find they have DCIS or worse. My oncologist recommends Tamoxifen, of course. Which I am taking, and hate. I guess I am just wondering, is anyone else out there in a similar situation? The pathologist said basically they're not diagnosing DCIS at this time based solely on the number of ducts involved in the ADH. Apparently that diagnosis is quantitative, which I did not realize. So that makes me nervous as well. How quickly can this spread and turn into DCIS, especially if she did not attempt clean margins? Thank you in advance, ladies! Hope you are all well.
- Jen
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A fellow attorney & Bar Show castmate (her DH did my knee replacements, too), had ADH. It was removed by simple wide excision lumpectomy--because it was not malignant there was no need to attempt clean margins. Endocrine therapy is standard-of-care after that, precisely to prevent recurrence as DCIS or IDC. One year followup for anything short of DCIS is pretty standard too.
Another thing about "clean margins:" by definition ADH and DCIS are non-invasive. It takes a mutation to turn DCIS invasive, and that doesn't often happen. It's also a misconception among those diagnosed with IDC that "if only it were caught earlier, it'd have still been only Stage 0". IDC doesn't start out as DCIS--it starts out at least Stage I (when exams and imaging even only a year earlier--like mine--had been perfectly normal and showed nothing).
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ChiSandy,
Thank you for taking the time to reply to my post. I am sorry to hear of your diagnosis, and I hope you are well on the path to recovery : ) I was just worrying, as usual - that something may have been overlooked. Like you said, the therapy and monitoring is about all they can do. I guess I am just afraid you know, as in your case when you went in after a year, and boom, there it was. I have anxiety issues anyways, so this isn't helping the problem for sure. Lol. Thanks again for your time and information. Again, I hope you are well, and that you may never have to go through that again.
- Jen
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Jen, I'm doing fine. Back on an annual mammo schedule just like before all of this started. Made it through radiation, no sweat. No chemo. Having the usual aromatase inhibitor symptoms, but only mildly. I had a baseline mammo at 38--and for the last 20 years had them at least every 2-3 years (and for the last 5 years, annually--all dead-bang-normal). Life is like that sometimes--"whoop, there it is," as that 1990s song goes. Glad it wasn't till I was 64.
I take it from the "212" you're a NY-er? I grew up in Brooklyn (back when it was 212, before it became 718).
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Bone scan results - arthritis, no mets, woo hoo!
Not that I thought I would have mets, but when they do the bone scan it makes you wonder. I asked if it were worse in any one place, and it is worse in my lumbar spine. (already knew bulging disks @ L2, 3, 4 & 5) Knees & wrists showed up too.
Wishing everyone good juju!
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CindyNY: That's a relief
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Great news CindyNY 🤗
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what a relief. Congrats
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ChiSandy,
Thank you for those very good comments you shared about ADH and DCIS with Je212. I understood what you wrote better than some of the formal definitions on the internet and you answered questions I had wondered about as well. Thank you.
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Hi everyone, I'm a new member, although I've been a lurking lumpie for a few weeks. My surgery is scheduled for 7/11/2018. I'm not particularly nervous or upset, more annoyed than anything, possibly because I had endometrial cancer ten years ago, and several mostly minor skin cancers since. These small cancers are like gum on the shoe of life that I keep stepping in 😛.
I do have a question based on my MRI results: besides describing the 1.1 cm tumor (which is mixed ductal and lobular invasive, according to the biopsy), there is "An enhancing focus approximately 0.8 cm anterior, inferior, and lateral to the mass. Non mass enhancement extends poterior to the spiculated mass approximately 1.8 cm representing architectural distortion." Of course I've googled all that, but except for learning that "spiculated" means it looks like a medieval mace or a sweet gum pod, I'm adrift in a sea of technical jargon. My best guess is there is a mystery blob hiding behind the known cancer. Have any of you had experience translating something similar? Does it mean my BS will use a slightly larger melon scooper? Thanks for any help you can give me.
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"Architectural distortion" means a change in the shape of the breast (or the part of the breast containing the mass) caused by something pulling or pushing out of place within the breast. It looks out-of-shape compared to a breast w/o a mass. It can sometimes be as simple and temporary as a wrinkle or fold in flesh. The "enhancing focus" might be a reflection or shadow--"anterior" (in front of), "inferior" (below) and "lateral" (off to one side) from the actual mass itself. "Non mass enhancement" might mean it's a shadow and not another solid object or "blob". (I assume they misspelled "posterior," or behind the mass). Which is probably how they inferred there's architectural distortion.
There is a radiologist, DJMammo, who "lurks" here. Might want to have him check in with his interpretation.
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Thank you, ChiSandy. It was probably my typo on "posterior." I guess I'll find out for sure after the surgery. In the summary section, it did say "suspicious for a satellite lesion," but since the report also stated "no abnormality of the left axilla, chest wall, or nipple," I'm not too worried about the possibility of a slightly larger excision.
I am slightly angry about this THING appearing in the first place, because I had an extremely thorough hysterectomy ten years ago, and never took any hormone replacements. Now I wonder if that oncology GYN should have prescribed blockers. My tests at the time showed no hint of approaching menopause at the age of 58, and even after the surgery, I had no symptoms like hot flashes, just an occasional night sweat problem -- which got more frequent two years later after a hip replacement, and continue to this day. I must have superpower hormones. But now I have osteoporosis in the other hip, which makes me terrified of taking hormone blockers.
Ick, sorry about the TMI medical history. I don't have a support system IRL (well, except for my hubby, but I can't dump on him all the time), so I'll probably over-vent here.
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Thank you, ChiSandy. It was probably my typo on "posterior." I guess I'll find out for sure after the surgery. In the summary section, it did say "suspicious for a satellite lesion," but since the report also stated "no abnormality of the left axilla, chest wall, or nipple," I'm not too worried about the possibility of a slightly larger excision.
I am slightly angry about this THING appearing in the first place, because I had an extremely thorough hysterectomy ten years ago, and never took any hormone replacements. Now I wonder if that oncology GYN should have prescribed blockers. My tests at the time showed no hint of approaching menopause at the age of 58, and even after the surgery, I had no symptoms like hot flashes, just an occasional night sweat problem -- which got more frequent two years later after a hip replacement, and continue to this day. I must have superpower hormones. But now I have osteoporosis in the other hip, which makes me terrified of taking hormone blockers.
Ick, sorry about the TMI medical history. I don't have a support system IRL (well, except for my hubby, but I can't dump on him all the time), so I'll probably over-vent here.
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Alice, there are hormone blockers which you can take with osteoporosis so have that conversation with your oncologist when the time is right. At the moment you are probably concentrating on preparing for surgery. Thoughts with you on the 11th.
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Alice- vent away, we're here to listen and encourage. Best wishes, I'll be thinking of you on 7/11.
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Alice - all those are words are similar to what I saw in my 3D mammogram and MRI. My initial biopsy also showed invasive with ductal and lobular features. And it was supposed to have been a 1.3 cm mass. After lumpectomy the actual cancer was .9 cm and they didn’t want see anything else in the hunk they took out. So I think tho those are just radiology terms that describes what they see in their languag
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Thanks to all of you. I get obsessive over words and then frustrated when it's jargon with which I'm unfamiliar. My girls are squishy and saggy, so they're probably as rumpled on the inside as they are on the outside, which could account for any shadow or unidentifiable bits and pieces.
Beaverntx, I think my final decision on hormone blockers will depend on the ER percentage post-surgery. The other type of blockers have side effect issues too, according to my MO, and I really dislike the idea of taking any medicine that would require more prescriptions to counteract those SEs. I'll have to see what the odds are on recurrence vs. quality of life.
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