Lumpectomy Lounge....let's talk!
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Quinan - hard decisions, we wish we didn't have to even be in these shoes. I chose LX and am very pleased with that choice. It wasn't easy to come to that place, but once I got there I knew it was right.
I have been on Tamoxifan for 4 weeks now and so far not so bad. Not sleeping is my biggest conplaint, but we are working on that. My BSO suggested Serenol .... bee pollen from a swedish flower. Have been taking for almost 2 weeks and I will say the last few nights I have slept much better. Anyone here taking that? My MO would like for me to have my ovaries removed ... anyone here that has done that?
Each of you are always in my prayers ... I'm back to work and 3 kiddos keeping me busy so don't have much time to check in. So thankful for each of you for being there!
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ML, i have not tried Serenol. I have had chronic insomnia for well over 20 years. I've been taking prescription meds for 10+ years, but for the last 12 months, it hasn't been enough and I've had to add ambien and Xanax --yikes!. Recently, tried melatonin. I had taken it before, but at a standard dose. This time I increased the dose slightly and holy cow! What a difference! I'm off the ambien and xanax, and have eliminated two other drugs, as well ( I've been taking three psych meds for insomnia for 9 years.) I'm hoping to be able to eliminate another drug, if I can wean off it successfully. In the meantime, I have more energy and I'm falling asleep and staying asleep for 8-9 hours. Score!
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Poodles, that's amazing! I can't believe you were able to get rid of Ambien and Xanax and 2 others. Did you have withdrawal side effects? I'll have to tell my DIL. What amount and what brand are you taking?
HUGS!
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Thanks for the compliments, Brightness & Paulette. My lifetime of hypochondria has finally paid off!
Amazing you were able to lose weight (20 lbs!) on letrozole, Poodles. I take Xanax & melatonin at bedtime, but if I'm really sleepy or need to take a baclofen for a cranky lower back, I'll skip the Xanax and see if I can simply fall asleep. Before bc, I used to take valerian root instead of xanax or melatonin--smells like stinky feet but drops me like a plugged buffalo. Unfortunately, it's a no-no with letrozole (or with ER+ bc in general).
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Nope, I had no problem dropping the Ambien or Xanax, nor the other two drugs. Now to try to drop the last one. I'm dreading it--I've accidentally forgotten to take it before and by day 3 I was sick as a dog from withdrawal syndrome. I plan to wean VERY slowly.
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Back in 1974, I stupidly went to a diet doctor (after a law school classmate returned from summer vacation 30 lbs. lighter and I asked her how she did it). He sold me diet pills--not prescribed, sold--he had techs filling paper bags from envelopes drawn from a wall full of little drawers, with the Dr.'s rubber stamp on the bag with the patient's name on it, w/o naming the drugs themselves, with each little envelope describing the pill's dosing schedul. Within a day food looked like nuts & bolts to me--a dish of green beans was no less attractive than a dish of ice cream. After three days, I carried our TV, back from the repair shop, up a flight of stairs to our apartment and thought I'd pass out. So I called demanding to know what each pill actually was. The nurse started to say what the function of each pill was ("appetite, thyroid, relax..") but I identified myself as a law student and the wife of a genetics grad student. So she told me the generic name of each--and other than the thyroid, they were all either amphetamines, diet-specific amphetamines, or barbiturates. I decided this was not for me--except the thyroid, because the Dr. had told me my T3 & T4 levels were low. So I told another classmate that I was going to quit the pills--she, a shrink's daughter, warned me to wean very, very slowly off the stimulants; to expect a temporary deep depression & anhedonia, but to remember that wasn't me, it was purely withdrawal. It took all I could muster to remember that while going through two days of the deepest depression I'd ever have until my PPD a decade later. Ditching that one little phenobarb at bedtime gave me wild nightmares too. And a year later, a kindly GP explained my thyroid levels were fine and the Synthroid could wreck my heart if I didn't drop that too.
Here's the thing: Until I hit puberty I was seriously underweight and anemic, and though not anorexic would get sated relatively fast. I wore the smallest sizes for my height range, and still needed the waists & wrists taken in but began to sprout breasts at 10 (a C cup by 12). From age 10-16, I discovered the joy of food and could eat whatever I wanted w/o consequence. In college, "thin" was everything--anything bigger than a 5 or 6 (today's 0) was considered "fat" in my fashion-mag-addled sorority circles. I first dieted at age 19, when at size 13 (the equivalent of today's 6 or even 4), 134 lbs. & 5'4" I thought I was too fat, especially after I met & fell in love with Bob and wanted to surprise him after his summer study abroad, and so briefly joined Weight Watchers (my FP just said, presciently, to simply stop eating starch and sweets and I ignored him). They almost didn't take me because they didn't think I needed to lose 10 lbs. I convinced them I was small-boned and therefore really 18 lbs. overweight, so they took me. After hitting goal and getting down to 116 and size 7/8, I went shopping at Ohrbach's and excitedly told the salesgirl why I was getting new clothes. "Great!" she replied. "When you get down below 100 you'll be just perfect." I walked out and went across 34th Street to Macy's. (Ohrbach's is long gone. I'm still here).
A year later, married and up to 137 (we'd moved to Seattle, where restaurants didn't even offer diet sodas back then--everyone was disgustingly slim & active), I returned to WW. Over the years, WW kept changing, I kept yo-yoing and trying different plans. When I had PPD I was actually anorexic for a year but the depression lifted, my appetite returned with a vengeance (but my metabolism didn't), and by 2004 I found myself at 234. I yo-yo'd again but have never let myself get up above 202. Of course, I am now an inch and a half shorter than I was at 20. I'm dancing around the high 190s, and will be delighted to get down to 170 or even 175 and stay there.
Had I (or medical science) known the effects on women of losing weight--especially when starting at just the high end of "normal"--and Nature's stubborn ways to get our fat % up to fertility-capable & beyond (hunger hormones, slower metabolism, shifting us from "pears" to "apples" after menopause), I would never have started dieting. I would kill for 134 lbs. (assuming it's not due to illness or anorexia) today.
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Sandy, that's quite horror tale. I'd have never guessed your weight within 30 pounds. I'd have been low. Thankfully you've managed to stay sane. A very sad commentary on how women view their bodies, isn't it? I was always skinny (and smoking did help keep me that way). Weighed 102 when I got pregnant each time and hit 140 with each of the boys. Now (no more smoking for 19 years), I hover between 130 and 140. I'm also 1-1/2" shorter than I used to be. This summer I seemed have gained 5 pounds ALL at my waist. My DIL said it was all that baseball stadium food. Most likely!!
HUGS!
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Quinan, it's not an easy decision. I had a lumpectomy first. I had two much tissue with cancer to get clean margins. I had a unilateral mastectomy. Later after my genetic mutation was found I decided to remove the other breast. It's a bigger surgery, you have to decide about reconstruction and no more sensation in your breast. If you seriously are considering mastectomy then go see a plastic surgeon and talk through reconstruction. You do what feels right to you. Hugs!
Sandy and Peggy, I have gained 4lbs since May. All in my mid section. I have never had a fat belly except for pregnancy. I am sure it's the exemestane contributing. Not to mention the lack of hard exercise due to the vertigo.
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poodles - how much melatonin are you taking. They suggested I take that at night with the tamoxifen, but I end up feeling wired. Exhausted, but can not sleep. Wired and like my brain is buzzing. The melatonin would be cheaper that the serenol. Maybe I just didn't take enough.
Molly - i have had vertigo with the tamoxifen, but started back taking a claritin every day and it has helped ....at least it is nuch better any ways.
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ML, I'm taking 5mg of Melatonin. I think it comes in 3mg and 5mg. I had tried the 3mg before, but it didn't seem to help much. However, the 5mg is working great.
Do you think the tamoxifen is making you wired up? If it is, can you try taking it in the morning instead of at night?
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I have seen 10 mg of Melatonin, Costco have 3 and 5 mg
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I tried the 10 mg melatonin and it didn’t seem to work any better than the 3, which I’m currently taking with .5mg Xanax. Might see if the 5mg might be enough for me to drop the Xanax. One thing that does help me is to put my digital screens into “sundown” mode, which dims them a bit and adds a yellowish cast, and I wear blue-blocking eyeglasses while using them at night. Meanwhile, I stopped taking Tylenol at bedtime & in the morning—doesn’t seem to be making a difference if I’m not in actual pain. The topicals (gels, patches, roll-ons) work nicely on trouble spots w/o systemic absorption
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Thanks ladies for all the great advise - I added my location to my profile and made it public so hopefully it shows up. But anyway, I live in Raleigh, NC so I am fortunate to have a very good medical community around me! I thought I was all for the lx + radiation until I researched what radiation can do to the breast (my ob/gym confirming this). I have extremely sensitive skin (I have had an allergic reaction to lotions and sunscreens) and am anxious of what radiation could do to my breast. If anyone can share her experience (again, the good, the bad and ugly) with radiation, I am all ears.
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I had my lumpectomy and sentinel node removal yesterday. Feel like I'm doing well. Breast Surgeon took out more tumour than expected but margins areclear. Lump was closer to skin than thought . Is this a problem for radiation?
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Quinian, are you a candidate for APBI? Like you, I have sensitive skin but having radiation internally kept me from having skin problems. Your cancer is small & recovery from lumpectomy is usually quicker & easier than recovering from mastectomy. I think most of us who had lumpectomies are happy with that choice. Good luck & fast healing, whatever you decide!
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Apologies if this isn't an appropriate place to post this. Just wanted to let people know that the Northwest Metastic Breast Cancer Conference, taking place Friday, September 22 and Saturday, September 23 in Seattle, will be livestreamed. http://komenpugetsound.org/nwmbcc/conference-lives...
The website says Friday's presentations include the "most current information on treatments, research trials, patient support and national issues for metastatic/stage IV breast cancer (MBC).
There are two breakout sessions on Saturday about lobular carcinoma.
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Quinlan, I have very fair & sensitive skin, and did not get skin damage from radiation (accelerated partial-breast). Toward the end, some pinkness that turned red, and enlargement of a seroma, but not even itching--much less pain or skin breakage of any kind.
Turns out that the sensitivity of the skin and the degree of pigmentation are not factors--because radiation doesn't "burn" the skin (a "burn" happens from the outside down into the layers--how deep determines the clinical degree of the burn). Instead, the damage happens from the inside out. The visible skin damage is due to the tissue below the dermis being damaged to the point where its ability to form new skin cells to replace the ones we imperceptibly continue to lose is impaired--so it's a function of new skin not growing fast enough. The more tissue there is between the skin and the target of the radiation beams, the longer it takes for skin signs to manifest and the milder they'll be. (With large breasts, there was a lot of fatty and fibroglandular tissue between the tumor bed & the skin). I am so pale that I never tan and always burn. But radiation is not analogous to a sunburn, so that's why I had so little skin disturbance.
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Quinlan: My skin is very sensitive. I have "Dermographism is an exaggerated wealing tendency when the skin is stroked. It is the commonest form of physical urticaria. It is also called dermatographism, dermatographia and dermatographic urticaria. " I am very pale skinned and had horrible hives after surgery from the surgical prep and horrible lumps from the ice treatments. I was very nervous about doing radiation because of these issues and because I have large breasts and I read that those individuals with large breasts have more severe skin problems.
I would suggest the accelerated whole breast radiation that is done in 3 weeks if it's available to you. This helps reduce skin problems because the duration is shorter. My skin immediately turned pink/red and stayed that way. My breast was hot to touch. Over time it also began to swell and I had severe nipple pain for a while. The symptoms were bearable so I worked the entire time thru my treatments. I never had any breaks in my skin, just inflammation especially at the incision sites. About 2 weeks after my treatment ended the skin on my nipple is pealing without any pain. I finished my rads on August 23 and my breast feels almost back to normal. My breast looks a little smaller now but I think that's because it's finally healing from the surgery and radiation treatments.
I would definitely say it's doable. I used Miader (from Amazon), it was developed by radiation oncologists specifically for use during radiation treatments. I used it three times a day religiously. I had my radiation schedule for 3:20 pm each day and usually went home and took a 30 - 60 minute nap to rejuvenate. I walked a few miles almost everyday unless my fatigue was too great. I really focused on exercise because they said that helps with the fatigue and that seemed to work since I was able to keep working the whole time.
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ShockedAt48, I have dermographism, too! I so rarely come across anyone else who has it. I also have a bunch of other skin conditions, but I've had the dermographism since 1998.
I also had a skin reaction to the orange stuff they put on my skin in surgery (still have a rash all over my chest and neck 9 days later), and my skin reacted badly to the tegaderm they used on my biopsies.
Unfortunately, my RO won't do the internal brachytherapy radiation for me; he says I need whole-breast radiation, but I'll only need 21 treatments. I'll definitely check out Meriderm.
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In May, my BS surgeon said I would get another MRI in September so he could make sure he had gotten it all in the lumpectomy. Now he's saying I will just get an mammogram and have to wait until March for an MRI. I have ILC and it was in the shape of a string of pearls and he wasn't 100 percent sure he got all the pearls. ILC doesn't show up well in mammograms. I'm really upset, as I thought I would know this month for sure that all the pearls were removed. I don't even feel like going to get the mammogram, it seems pointless. Only the largest "pearl" had shown up in the original mammogram and the smallest didn't even show up on ultrasound.
I am trying to get over how angry I feel. I think a lot of the emotion is just a delayed reaction to getting bc. The waiting is the hardest part for sure. I guess I figured if more surgery was needed it would be over and done with this year.
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Quinian - Hello! Just chiming in about rad & lumpectomy. As a natural redhead (now silvery white), who sunburns easily, I was very concerned/worried about radiation skin effects. Made it through radiation (16 "regular" doses + 4 boosts to tumor bed) with minor skin effects. Slight rash, like "heat rash" and nipple a bit ouchy- but had a prescription lidocaine ointment that worked wonders. Used Miaderm extensively, 4x daily - Available at hospital gift shop, but I ordered from Amazon. I wrote a lengthy post about radiation, gathered from my own experience as well as others on one of the rad threads. Please feel free to PM me, and I can send directly to you. My breast surgeon presented lumpectomy & sentinel node biopsy w/radiation as my best option, due to early detection, small tumor size, etc. Glad that I was able to keep my breast with no noticeable (at least when clothed) difference in appearance/size. Hope this helps.
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AngelaJL: Its great to talk to someone that has dermagraphism too! I currently take Zrytec and it helps quite a bit. When I first came down with it my daughter would write stuff on my skin all the time! I had the hives on my neck and chest on just one side post surgery for about 2 weeks. More miserable than the incisions. There is relief coming! Correction, it's Miaderm I used during radiation,I had a typo!
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I had a lumpectomy on Sept. 20. It is 4 days later and my pain is manageable without pain meds. But I am exhausted from the slightest activity. I still feel drugged even though I am off the pain meds. Am I just being too impatient? I just want to feel more like myself
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HoosierJoy, welcome! You're doing well if you're off the pain meds. It's emotionally exhausting waiting for pathology & anticipating future treatment; it's no wonder you feel tired. Just take care of yourself & do something self-indulgent. You'll feel more like yourself soon.
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HoosierJoy, Welcome! Sorry you had to find us but glad you are here. You are definitely being too impatient. You have had major surgery and your body needs rest to heal. Not saying you shouldn't do things but take it easy and don't try to do too much. Most of us when we hear "outpatient surgery" seem to think it is minor surgery. Not in this case, it isn't. You also could be still feeling the aftereffects of the anesthesia. Glad you are feeling good!
BTW, it would definitely help us help you if you would fill out your profile, then go to the top right of the page and click SETTINGS and make each and every item PUBLIC. Then it will show up after each of your posts. We also would like to know where you are located. Often there are other BCO gals near you. And we love to get together and support each other.
So relax. You are doing fine!
HUGS!
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HoosierJoy: Be sure to take it easy. I know it's frustrating, but most likely you will feel fatigued for a few weeks. I was surprised because I felt good and had energy the first week - might have had something to do with my daughters and grand-daughter being there from out of state. But at week two and three fatigue hit. Take care. You'll feel more like yourself soon.
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I filled out my profile and I think I made it public. I am having a little trouble navigating this board and finding my way back here! So much good information and support. Thank you for the encouragement to give myself time. I am a teacher and expected to go back to work next week so I am feeling a little pressure to get this recovery moving. Thank you for your responses
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Hoosier - since you don't have to do chemo you will be speedy recovery!
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I've had this nagging feeling for the last couple of days that there was something important I was suppose to remember. I thought perhaps it was someone's birthday but I couldn't remember whose. So just a few minutes ago it came to me....my surgery date. It's been 3 years since my lumpectomy! I remember that first year how scared I was and that's when I turned to this site. It was such a comfort. I rarely post but I always remember all the support I received from this group. Thank you to those who are still posting here from my "old days" and I want to encourage those who are new to this page that things do get better....you might even forget your surgery date!
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Congrats, Nash! My 2-yr lumpy-versary was Saturday. Joy, take it slow. My BS' NP warned me I would likely feel "profound fatigue" post-op, so much so that I wouldn't even want to go upstairs to sleep in the bedroom. I turned out not to get the fatigue (but I did get the "scoline syndrome" truncal muscle soreness). But every case is different. Just because it's "same-day" surgery doesn't mean it's "minor." (My gallbladder and my husband's hernia repair surgeries were both "same-day," as was my friend's BMX, but they were all major surgery requiring general anesthesia). In fact, most major surgeries these days--short of brain, heart valve replacement, coronary bypass, colon resection, Whipple, joint replacement and open-reduction/internal fixation fracture repair--are done on an "outpatient" basis, with at most a 23-hour single-night admission if not "cut before lunch, home before dinner."
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