Lumpectomy Lounge....let's talk!
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Thanks for your understanding PontiacPeggy. Yes, I think I'm a bit depressed. Today was a good day, went shopping, visited my sis and nephew and cleaned up the house. Helped normalize things some.
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Thanks very much Tbalding! 0 -
Poodles, I think I'm more like you. I guess we could be called fatalistic - it will or it won't come back. I don't obsess over it either. I do get a tad concerned AFTER my mammos waiting for the results but this year I'm having cataract surgery the day after my mammo so I have something much nicer to occupy my brain
HUGS!
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Gardener4, it's so difficult at the beginning. And truly you do NOT know anything. Most of us have some sort of vague diagnosis and that's usually the extent of our knowledge. So much to learn. And we all worry and obsess. Keeping busy is very good and I'm glad you had a lovely day. Try to breathe. Worrying doesn't change a thing.
HUGS!
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Dear KB870: I feel the same way as you. I feel extraordinarily lucky that my cancer was actually diagnosed early. Lobular carcinoma is extremely hard to detect. The 4cm lump was biopsied 3 times and each time the pathology report said that the lump was benign. When I was diagnosed with ILC and I was going to have my lx, I insisted on having the second lump removed because I could feel the lump. The pathology report showed the Invasive Tubular Carcinoma, Pleomorphic LCIS, PASH, FEA, and ALH. It was a surprise. I am glad that you are ok.
Dear Gardiner: You have really had a difficult time. Thank G-d that you are ok. I am praying for benign results on your pathology report. Good luck. It is terrifying. The waiting and wondering is awful. I hope that you feel better soon and that you recover from all of your injuries from the car accident. As Peggy said, no matter what your pathology report will say, you are welcome to stay on this site. Welcome.
Dear VelvetPoppy: As they say, "Man plans and G-d laughs." I am glad that you are ok.
Dear Tappersmom: When my radiologist told me that I had breast cancer, I actually told him, "You are kidding, right?" I never even entertained the idea that I could possibly be diagnosed with breast cancer. I had so many biopsies and excisional biopsies over the years, before my bc dx, and my daughter had an excisional biopsy removing an "egg sized" (I don't have the exact cm size, the doctor stated "egg sized") lump when she was 17 (she is 21 now). I had been through lump after lump so many times and the pathology report was always benign. I never worried. Thank G-d because I was not worried about my daughter's lump which was a fibroadenoma and benign. My radiologist said, "I don't joke about this kind of thing." A breast cancer dx is surreal for sure.
Dear Peggy: Good luck with your cataract surgery and with your upcoming mammogram.
Dear Poodles: ((HUGS!))
Dear TBalding: I guess that I felt detached too.
Feel well to everyone else.
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had my first two rediation treatments Thursday & Friday. This weekend I was so tired! Slept a lot. 😕 I don't think it is from the radiation but from a little depression & actually not having to go anywhere until Monday. Those of you who had the daily M-F treatments were your weekend like this
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Velvetpuppy, I'm with you on the planning before the diagnosis.... I was suppose to babysit my granddaughters in AZ for a week. Surgery got in the way. Then I thought its ok I'll see them for Easter.... Radiation treatments end on the 25th of April 😔 DH said I should go anyway but I can't imagine flying out on Friday and coming home on Sunday so I can make my Monday morning radiation appt. would be just too much. So I told my daughter I'll come for a visit after I'm done with treatments.
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(((Gardener4))). So unfair what you've already had to endure, and now this. Oddly, though, when I was hit by a car and had my leg shattered, and later two total knee replacements, my life was disrupted far more than by getting breast cancer. And when my husband (or DH as we say here) Bob had his colon perforated during a routine colonoscopy back in May 2015, was “medically (mis)managed" into fluid overload and nearly into heart failure in the first of his three hospitalizations before finally getting surgery (and then two weeks after recovering, his hernia got incarcerated and needed surgery in July), I feared for his life far more than I did (or do) for mine. He had some suspicious spots on his lung that showed up on his abdominal CT, but fortunately they disappeared on followup scans. We resolved that regardless, we were going to take the pre-Christmas Mediterranean cruise we'd booked six months earlier. My BS, RO & MO got together and devised a treatment plan that would let that happen (the MO said, before my OncotypeDX score came up low-risk, that if I needed chemo she would schedule it so that the cruise would be during one of the “good" weeks). And we did indeed take that cruise. Yes, we both needed to take the least strenuous shore excursions and I had to forego the onboard spa due to lymphedema risk, but we did it. Three months later, I went on a continuing legal ed. (I'm a retired lawyer) trip to London, Lausanne & Paris; in July we went to Rome & Tuscany for a week and a half; to NYC & DC for Christmas and the week before New Year's. And one week from tonight, precisely at this moment (Greenwich Mean Time) my plane will be touching down at Heathrow for another continuing legal ed. trip.
Man plans & G-d laughs, but then sometimes just rearranges the schedule a bit.
As to how I felt at diagnosis (and do now), I too have sort of a disconnect about being a cancer patient. When for the first time in 20 years my annual mammo showed a “focal asymmetry,” it was during the whole brouhaha in the news about DCIS possibly being overtreated, with op-eds by and articles about UCSF’s Dr. Laura Esserman. I assumed that if indeed my “asymmetry” was not benign, it would be DCIS—because it wasn’t there the year before, or the year before that. It was guesstimated by the radiologist doing the ultrasound at 7mm. Had to leave the very next day for two weeks on business: New Orleans (entertainment law course & coffeehouse gig), Scranton (senior center gig), and a folk festival over Labor Day weekend in a far suburb. We scheduled the biopsy for the day after the festival. The whole time, all I could think about was “I might have cancer. It might be nothing. But it could be cancer. What if it’s cancer? OMG, I have cancer, my life is over.” Except for the times I was performing or seeing concerts, it was on an endless tape loop in my brain, a crazed rabbit running around inside my head, especially when the words “BIRADS4b” showed up in my patient portal. I downloaded Dr. Susan Love’s Breast Book, another by Dr. Elisa Port, and even Chicken Soup for the Breast Cancer Patient’s Soul, and read them all instead of novels or watching TV. It didn’t help when, the day after I flew to Philadelphia and was picked up by my singing partner, we arrived at the senior center only to find we weren’t on their calendar and someone else was booked. (The woman who’d rebooked us right after our previous gig had quit, taking the calendar with her and not informing her successor). I was furious—I could have flown home the afternoon my course ended and had my biopsy a week earlier!
When the phone rang the night of the day after the biopsy, it was my GYN’s partner, asking me “Dr. Singer’s flying home from SF tonight, so I’m calling. How’s your pain?” I said I felt fine, and the radiologist’s nurse had called me that morning with just the same question. There was a pause; then “ohhhh…I thought that the note saying ‘call patient about biopsy’ meant a followup…” I gulped and asked, “You mean there’s a result already?” She said, “yes, let me check…invasive ductal carcinoma, grade 2…” A chill went through me as soon as I heard the word “invasive;” I couldn’t believe I could, in the space of one asymptomatic, no-lump-palpable year, go from “nothing” (much less “benign”) to “invasive.” How could it have been “invasive" without being in situ first? (Go to jail, go directly to jail, do not pass GO, do not collect $200…). Bob wasn’t home yet, but Gordy (DS)—on his way out to emcee a comedy open mic—asked me what was wrong because he’d never seen me so pale. I told him, and he immediately called to get someone else to emcee. “You need me—and the last thing I want to do is spend 2 hrs. listening to millennials bitch about bosses & daddy issues & tell dick jokes when all I can think about is you.” I hugged him. Bob came in a couple of hours later; we told him. There was a bottle of pink champagne in the fridge for something or other—we opened it anyway and toasted: “F—k cancer. Kick its hairy little ass.” I felt suddenly, strangely calmer.
I got the call and a message in my patient portal the next morning, confirming IDC, grade 2, ER+/PR+/HER-2-, est. size 7-9mm. Dr. Singer cheerfully said it was caught early, and looked as promising as IDC could be—and I should make a surgeon appt. ASAP. I asked for recommendations. The first guy she mentioned was booked two months out. But his partner was available in early Oct. So I called her, and found out she had a cancellation and could take me just two weeks from then. Saw her the next week, and felt buoyed: I finally had a plan, even a treatment schedule (MO appt. a week post-op).
I realize that (kinahurra, knock wood) I am as lucky as an IDC patient can be: no hereditary genetic mutations, Luminal A-type (slow-growing), node negative, under 1.5cm, clean margins. I had lumpectomy with a short protocol of targeted radiation, and no chemo, just 5 yrs. of letrozole. I had dropped out of the Bar Show cast because I didn’t know how treatment would affect me and it wouldn’t be fair to the show to do a half-assed job or even quit midstream; they let me write a sketch instead. One of my castmates (the wife of my knee surgeon) said she’d had a lumpectomy for ADH and was taking letrozole; another said her mom had just finished treatment: “you’re gonna have a really shitty year and then you’ll be fine and get on with your life.” Well, I had a couple of scary months, but it turned out fine. I showed up at the cast party and everyone said, “Oh, wow—great reconstruction! Nice wig!” They were flabbergasted to hear it was still “all me.”
18 months post-dx, I usually go an entire day without consciously thinking “I have breast cancer;” except when I look at my medic-alert bracelet, put on compression to work out or fly >4hrs., groan about my weight gain from letrozole (and the comfort-eating pity-party I threw myself for awhile) and of course chat with you sisters here. My PCP still reminds me that my greatest health risk (thanks, Mom, Dad, both Grandmas, an uncle and one Grandpa) is still cardiovascular (and if I get lax about my asthma, cardiopulmonary). I think (especially at the gym), “I’m a 66-year old woman,” not “I’m a cancer patient.” (Can’t quite say “survivor” till you’ve died of something else).
It’s a good disconnect. (For now, of course).
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Vivian & Gardener .....Welcome ... You have both come to the right place with Sandy's knowledge, Peggy's heart and the rest of us cheerleaders you will find support always.
TapperMom....I am so glad surgery went well. You are going to have discomfort and emotions through this whole process. Praying for your biopsy report.
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Experience with sentinel node biopsy (done with lumpectomy).
Hello, On 3/31, I had a lumpectomy and sentinel node biopsy (SNB). As I prepared for those procedures, I found it very helpful to search for info at breastcancer.org and to ask questions here, so I'm describing my experience in the hope that this might be helpful for someone in the future.
Perhaps I misread, but before SNB, I was concerned the initial injection might be in a very sensitive area under the arm. I was pleased that the actual experience was not painful. In the pre-op room, breast surgeon numbed the area of my breast (near the tumor) with local anesthetic (lidocaine?), before injecting radioactive liquid. There were a few other injections, one of which went very deep, but I did not find them to be painful. I experienced stinging for a moment, but no bad pain. (In last 2 months, I had 3 different core needle biopsies - 2 US and 1 MRI. The lidocaine and radioactive material injections for SNB felt similar to numbing injections for the biopsies but these were actually less painful than the injections before the biopsies and certainly less tender then the actual removal of tissue for the core biopsies.)
As the surgeon promised, the SNB was done in the OR, after I was fully sedated with general anesthetic for the lumpectomy! I have no memory of the actual SNB procedure. That said, the incision for SNB and the area near it are very, very sore! I'm following exercises given at discharge (and ones I found on breastcancer.org and on Sloan Kettering site).
I've seen questions about why this is done in more than one location. I understand that at least in this situation, it had to do with which locations are certified for use of radioactive materials.
Again, I appreciate all that others have been sharing. For me, next step is path (3 business days), and I believe Oncotype DX takes c. 2 weeks? I realize that this is on a continuum. Although I have ICD, it was caught early so I'm keeping that in perspective.
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Blooming, waiting is a downer. Glad you are doing well. SNB site is the most annoying part of a lumpectomy. And it keeps on "giving" often up to year when the nerves finally get their act together. I also found the dye injection nothing special. Lidocaine was amply used throughout my day - for the wire locators and then the dye. BTW, my BS did the dye injection. Hoping the path report is good!
HUGS!
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Blooming, we had the same procedures on the same day - on opposite coasts! The radiologist did not numb my breast as he said the lidocaine injections would hurt as much as the isotopes. I'm not so sure about that in retrospect!
I just took my first shower since my shower Friday morning. Felt good but now I need to rest! I realize that most of my discomfort is coming from my extraordinary bruising. My breast and underarm area are the most glorious shade of deep purple! I'm surprised by the size of my lumpectomy incision - it's at the bottom of my right breast and extends from one side to the other. SNB incision is also pretty large.
I'll be calling the surgeon's office today to make my follow-up appointment. As we all agree - the waiting is the pits!
MJ
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Hi all - I have my post op tomorrow morning - ten days after lumpx. I would describe my situation as this: I can do a lot of things with no discomfort, most things with a little discomfort and a few things I can't do without major discomfort - actually pain. I get that zinger nerve pain along the back of my upper arm. I can't start RADS until I can raise my arm above my head comfortably. I think that might take awhile. Does this sound like anyone else's experience?
Kathy
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Kathy, glad you're doing well. Usually they like to wait 4-6 weeks post-op before starting rads. They want you to be healed as well as having a good range of motion. Keep gently "walking" that arm up a wall. You'll get there. Zingers may be with you for awhile
You seem to be right on track. Good luck with your appointment!!HUGS!
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Hi all, it's me again. I'll see the surgeon to talk about surgery plan tomorrow. Now I'm just so worried that ALND can't be avoided.
Here is my situation - before chemo, I had one node (level I) confirmed positive by biopsy and mutiple scans (ultrasound, breast MRI, PET/CT). After chemo, they only did an ultrasound and found all nodes look healthy now. I don't feel relieved at all because I know there might be still some positive nodes and only the pathology after surgery could tell. I am afraid SNB is not an option for me.
Now I am just feel sad and hopeless. I need to use my arms a lot at my job. I am only 30 and I don't want to develop lymohadema this young...😓
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steph, I understand your concern about ALND vs SNB. I had two positive nodes so had levels l/ll removed. I have no trouble using my arms. I would discuss your concerns with your surgeon. You may be able to have SNB and then radiation instead of ALND. Many cancer centers don't do ALND any longer.
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KLNiss - Your situation sounds like where I was 10 days post lx and SNB. Yes, as Peggy says, those zingers stay with you for awhile. I waited as long as possible between lx and starting radiation, as the SNB incision was still bothersome and armpit tenderness still an issue. Have been told this can also stick around for awhile.
Steph - Urge you to frankly discuss all your questions/fears with your Surgeon and obtain the answers you need. This is a difficult journey and emotionally charged - just know that we are here to listen and to wish you well.
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19 months out I still get a few zingers, as well as weird “let-down" and fleeting not-quite-sore sensations as my tumor cavity seroma continues to resorb and my radiation fibrosis continues to evolve. (I always worry about breast LE too, though my operated breast is a full cup or two smaller than the intact one, and I imagine I'd see or feel swelling with LE).
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Hi- how is everyone doing? I am doing ok. Though I am wondering if my Femara is not causing me troubles with fingers going numb and ringing ears. I have a new MO who is not very proactive so that is always frustrating. My last MO started me on Zometa infusions every 6 months for 3 years as a preventive measure- he said it is shown to keep cancer out of the bones- it is used for Osteoporosis normally and I have good bones so far. My new MO said it was up to me if I wanted to continue- I soooo hate that- I need direction. If I stop and the cancer comes back I will feel its my fault- if I continue and it breaks down my jaw bone( this is a nasty side effect that is supposed to not happen often) then I blame myself as well. I just wish there was not so much difference in treatments all the time.
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How is your cervical spine, ndgrrl? That finger numbness and tinnitus might not be due to Femara, but rather to arthritic discs in your neck compressing certain nerves, especially the radial nerves, that run down your arms (e.g., cervical radiculopathy). The tinnitus could be caused by bone spurs in the neck pressing on the spine and affecting blood supply to the inner ear. When the little “cilia" (hairlike thingies that wave in response to sound and transmit the signals to the auditory nerve and then the brain) get damaged, they can't wave freely and eventually fall-down-and-can't-get-up. Before they stop transmitting external sound signal altogether, they actually produce their own noise (called otoacoustic emissions, that can actually be measured by a tiny microphone an audiologist puts into your ear). What can damage those cilia? Impaired blood supply, high fevers, prolonged or sudden extreme noise exposure, or certain meds…including even aspirin, acetaminophen, antibiotics, and antihistamines. (And, Femara could cause that indirectly—the estrogen deprivation it produces accelerates the symptoms of aging…including hearing disorders).
Have you had a bone density scan? That would determine if your neck bones are still strong. An X-ray would reveal any age-related degenerative disc changes (cervical spinal osteoarthritis). And c-spine OA can show up as early as your late 20s. (I was 31).
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ChiSandy,, Thanks for the infor.. My hand numbness started last July after my first ever massage on board the ship that took us to our dream trip to Alaska.She really did some digging into my shoulder- deep tissue and I woke up the next day in pain, my ring finger has yet to wake up. It was also the same time as my side effects from Arimedex kicked in high gear, I legs, feet and bones hurt so badly I could hardly walk and I was so mad that I could not do what I wanted to on the trip we had been saving years to go on....
I did have a neck and upper back MRI in about September, which did not show anything . From there I had an EMG which showed slight carpel tunnel, Carpel Tunnel surgery in December which did not go well, I have had infection in the carpel tunnel and healing has not went well- surgeon left it open and did not stitch as he likes to leave it drain but I am not healing well. Outside healed- inside not healed- infection about 3 weeks ago- currently on Steroids for swelling in ears and hand. Ring finger still asleep as well as lots of hand swelling. I am currently waiting for an appointment with a diff hand surgeon to get a 2nd opinion. I sure hope they can get me in soon.
I do see an EMT on April 18th, with audiology first. I sure hope they can figure this all out.I will be having a dexi scan on April 20th, first one since being put on an Al. I had a baseline 2 yrs ago while I was still on Tamoxifen as I refused to go off it as I was having minimal side effects. I started an Armidex April 2016, after the MO told me he was afraid that I could develop blood clots while driving to get on our boat in Seattle. I took myself off it after my July trip as I felt 90.MO said I should have gotten side effects sooner than July since I started it in April,, I felt it is what it is and I am not living this way as I got where I could not get out of the bathtub at age 47. Well after two months off it I felt great, I finally decided to start Femara end of Sept 2016.
It is just so hard to decide what is causing what.
Thanks again for the information.
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Steroids can be ototoxic. That massage may have disturbed a neural pathway (that’s why I very, very rarely get them any more and disclose all the potential perils, including lymphedema, in excruciating detail to a potential massage therapist).
Nobody knows which AI will go easiest on them till they try. There’s no rhyme or reason. And even within one AI, various makers of the generics or original patented brands use different formulations of inactive ingredients like fillers, dyes, coatings, etc. that may be bigger culprits in side effects than is the active ingredient itself. Adding to the confusion is that some people are hypersensitive to a bazillion chemicals and allergens, others sensitive to various different ingredients, and some minimally or not at all sensitive. I do notice that the further past menopause you are when starting an AI, the less onerous their SEs will feel, because we’ve gradually been experiencing them anyway as effects of aging.
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Hi All,
Thanks for the insights and the empathy about waiting for results. Tappermom383, thanks for pointing out that we went through this on same day on opposite coasts!
Nurse who called yesterday to check in seemed surprised when I asked about time frame for learning results of Oncotype.
* Are there circumstances in which docs opt not to bother sending this?I have IDC < 1 CM so perhaps they figure there's no need to check Oncotype? (I realize that in the scheme of things, this was caught very early, so it's not a big deal. I am sorry to be worried about and ask for others' time on something that is so minor.)
* I can't tell from hospital discharge what was sent out. Can't even tell if they did an excisional biopsy of an intraductal papilloma (found non-cancerous in MRI biopsy), per original plan.
* Feeling like I need to learn as much as possible and read all info to get a handle on what's happening.
I appreciate recent feedback about large, pendular breasts and breast reduction.Consulted a plastic surgeon. Considering reduction after LX and before RT. Recommendation is that it would enhance ease and efficacy of RT. Some concern about contents of breasts "shifting" after reduction, making it harder to find the original target?
After sentinel node biopsy, did any folks use special wedges or pillows to support arm while sitting and using computer?
Sending good wishes to all.
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Hi everyone. I am not sure how this community works but I just wanted to wish tappermom the best and that I will be thinking of her. I had lumpectomy and sentinel node biopsy march 30. Don't know the full results yet but everything went well. This is a whole new world for me and a little scared but reading all the posts gives me certainty that all will be well. I have found a community of amazing women. Cheers!!
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999gloria - thanks for your good wishes. I have found this site to already be a tremendous help. I, too, am waiting for my results. Have my follow-up appointment on April 13. Here's hoping for clear margins and no lymph node involvement for us both! Some friends stopped by yesterday afternoon with wonderful food for my husband and me. They stayed about a half hour - I was exhausted by the end of their visit and all I did was sit and chat! My husband keeps asking me how I am and seems to expect an answer of "just fine." I asked him if he'd like to see my surgery site but he declined. I think it would help him understand the discomfort I'm feeling if he saw the size of my incision and the gorgeous purple bruising. I really need to get some work done today (fortunately work from home). I just have to remember to pace myself.
Best of luck to you, 999gloria, as you wait for the results. We need distractions!
MJ
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I left the house for the first time this morning. I drove to the bank and then grocery store. Did some groceries had help to take them to car but now had to leave them in the car no one home to help. Lol. I should've thought of that. I felt like I was on another planet. It felt good to get out though. I also did the dishes. Yay! My incision seems to be healing well same for th SNB site. I do have odd twinges which is normal I imagine.
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I'll be riding to the post office later today (with my husband driving) as our daughter told me she sent me some "feel better" gifts - so sweet! I don't even care what they are - the fact she thought to do this means the world to me. I know I'm starting to heal as my incisions are feeling itchy (but also sore)!
MJ
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~ChiSandy~
Our diagnoses are so close. My IDC was 3mm. The BS gave me a mantra because I was so scared: 'Cancer is NOT a death sentence. I'm going to be okay!' It helped and still does when I become anxious, especially before a dr. visit.
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I just talked to the surgeon. What he said was a shock to me, he said he would not take out any nodes if I am willing to do radiaion. I had one node positive before chemo, and after chemo, all nodes look healthy under ulreasound. How could not taking out any nodes be possible ?
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steph, I have done a lot of reading lately. It seems to be the trend to help avoid LE and other complications to not remove lymph nodes. If you are not comfortable you can get a second opinion.
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