Lumpectomy Lounge....let's talk!
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Also joining the chorus re: seek out an experienced oncological breast surgeon if at all possible.
Poodles - My heart goes out to you with your troubles. Just be there for Mom in the best way you can.
Sandy - Sad story about your Mom - Sound's like she was a very spirited lady.
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Well, the solitaire game didn't go well. It was anxiety-provoking for my mother because she had so much trouble remembering how to do it. My sister and I sat with her and gently guided her. We even changed the rules a little bit to help her be more successful. By the time she got finished she was exhausted. I don't think she enjoyed it very much. I suggested that tomorrow we try a simple board game or card game, like Go Fish or Candyland. She is really upset that she had so much trouble with a game that she's been playing for 70 years.
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Oh, poodles - that is so heartbreaking. I can't even imagine how difficult this is for you. Our thoughts are with you!
MJ
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Poodles, I'm sorry. Maybe games aren't the best way to go. Maybe jigsaw puzzles with few pieces? Or just photos and don't make her guess, say "Here I am with x and y." ? Would that work? Or just read to her. Bible stories if she would like them or something that doesn't require her to remember. It's hard
HUGS!
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Poodles- when I did my internship at a rehab facility (way back in 1999) I had to lead the activity group every day after lunch. I made games up! My favorite was "Have you ever?" I just took a stack of index cards and in bold print I wrote simple questions. You could try that with your mother. I did questions like "have you ever been on a hot air balloon? " have you ever been to California?" Have you ever ridden a roller coaster?" With the group we played for pennies and who ever had the most when the last card was drawn won. You might even find something out about your mother you might not know. . I had one group that was a little scandalous so I made questions like "have you ever been skinny dipping? You could custom the game to your mother. Just a thought.
Hugs tomorrow is a new day!
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As the wife of a (retired) general surgeon, I want to add my vote for a breast surgeon, even for a lumpectomy. Mine did a fantastic job. It's only been 3 months and I can't even see the incision at my nipple. I also am a proponent of partial breast radiation - not done everywhere but if you are a candidate, it's a week out of your life rather than many. And the SE are minimal.
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19 months out I have definite asymmetry, but not what you'd think—the operated breast looks amazingly normal but for the faint scar on the side. Still much larger than average but round & almost “perky." It's my untouched left breast, 1-2 cup sizes larger, flabby, flaccid & pendulous, with the nipple pointing due south, that looks weird. I had a very experienced surgeon, who specialized in lumpectomies and skin-and-nipple-sparing mastectomies, and was one of the first to urge SNB over ALND as the standard for determining node status. From the looks of it, she must have had oncoplastic training as well.
And another vote for partial-breast rads if you’re a candidate. My breast center didn’t have the equipment for IORT, and my surgeon was not a fan of internal balloon-or-catheter rads because she saw too many complications; but it was only three weeks + a day out of my life—and actually only two hours a day total (including the commute and a snack stop). Mine was external, targeted, and hypofractionated (double strength).
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Yes, a breast surgeon is definitely better--and even among those there are differences! My new one (who also has oncoplasric training) showed me some spring-like thing today called a biozorb that she may decide to insert next week at my re-excision that helps the structure of the breast as it heals over the next 12-18 months (time it takes for coil to be absorbed by the body), which also places clips to help target radiation more precisely.
Taco and Sandy--I'm jealous! RO said I couldn't do partial radiation because I was "too young" (under 50) and a couple other factors. Instead, I'll have to hold my breath and deal with SEwhile they do whole breast radiation for 6 1/2 to 7 weeks.
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PontiacPegg I had the genetic testing and was negative for all 25 genes. Saw the surgeon today. Results are good except he's not 100 percent positive he got it all. So the plan is to heal up for a month and then have another MRI. If there is some he will do another lumpectomy. Either way I'll need 6 weeks of radiation. I just found out there are several pilots who volunteer to fly cancer patients to appt on the mainland. I live in the San Juan Islands so flying will make the radiation treatments doable. Otherwise it would take up the whole day if I had to takea ferry. I'm feeling much more relaxed now that the road ahead is more defined. Can't wait for the swelling to go away. He drained some fluid out today, so it's more comfortable now.
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SJI, good news on the genetic testing. BS didn't get clean margins 1st at time for me either. Delays other treatments but at least you know what to expect if you have to have another surgery.
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SJI, I'm so glad you now have a treatment path. I think it is easier to deal with something you KNOW rather than the unknown. That's wonderful that you can fly in for your radiation treatments. That certainly would be a grueling trip 5 days a week for 6 or 7 weeks. Here's hoping the BS got it all!!!
HUGS!
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Just popping on to say hi to everyone. Welcome, new people! I'm glad you found us because this place is the best!!
Poodles, my heart and thoughts go out to you as you deal with the decline of your mom. Very difficult
I am still trying to figure out which hormonal therapy I need to be on. Two weeks after I went on letrozole I got extremely stiff hands, but that was doable. Then my neck started acting up. It has always been arthritic but never painful. I developed pain in my shoulder and at the base of my skull. I could not even lie down without pain and my sleep was suffering. I couldn't work at the computer either. So my new MO put me on a med break. The neck has finally resolved and is back to normal. My hands are still a bit stiff but not as bad. On the letrozole I could not make a fist in the morning. The neck problem could be coincidence or not. I guess the only way to really tell would be to go back on letrozole and see if it comes back. But I have decided to try tamoxifen next. I told my MO if I did not feel a lot better on tamoxifen I would switch back to letrozole since it is supposed to confer a little bit better protection against recurrence. But if I feel good, I will stay on it for 5 years and then switch to an AI. Quality of life is more important than quantity to me.
I like my new MO very much. He is willing to work with me.
Hope everyone is doing okay!
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Varga we play Have you ever at Bridal Showers, boy depending on the crowd it gets pretty rough at times lol You learn things about people you dont just need to know
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Vargadoll, your game is a great suggestion. She might be able to answer questions like that. I know she doesn't want to do puzzles, she has already refused. And frankly even a 15 piece puzzle would probably be too much.
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Steph, I didn't have family around when I had my dx and everything following... Consider this Lounge as your extended family... There is Always someone here who is going through, has been through or just starting that will be there when you need someone to vent, cry, through your dishes out the window... and they are all so accepting... we're in this together, not something we chose, but we are here and we all Welcome you with open arms...
Sandy, I'm dealing with the seroma too.. mine wasn't as bad as yours, the pains have settled, now just waiting for June and my mammogram..
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Alice, welcome back. If ever there were a postmenopausal woman who didn’t have to worry about blood clots from Tamoxifen, it’s you: the poster child for an active heart-healthy lifestyle! Hope Tamox. treats you kindly, and that by the time you’ve been on it for 5 years there will either have been studies saying that an AI followup wouldn’t be necessary, or that new ways to ameliorate AI SEs will have emerged.
Judy, I never had pain from my tumor-cavity seroma, just radiation enlargement & fibrosis. The enlargement has reversed and continues to shrink, and the fibrosis greatly softened.
SJI, when I lived in Seattle I adored going to the San Juans—Friday Harbor was my idea of the perfect PNW maritime small town. The only PITA was having to reserve a spot on the ferry and be in Anacortes by (ugh) 6:30 am. Didn’t go back till 10 years after we moved here, when on a PNW vacation, we took a whale-watching cruise from our resort near B’ham (Inn at Semi-Ah-Moo) to Orcas Island. Is Rosario Resort still operating?
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waving Hi to Alice
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Hi all, I met with my SO and another surgeon a few weeks ago and while I was diagnosed stage 4 from the get go a few months ago, I only have a single bone met and a lumpectomy is still recommended. I'll finish chemo in a few weeks and the plan is to have the lumpectomy and a reduction/lift at the same time in early June. My left axillary nodes will be removed as well. I've been told to sew a pocket onto a night gown so I don't have to carry around the drainage bag but I'm looking for more tips for a smooth recovery, if you all want to share. Thanks!
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Alice, sorry you were having crappy SEs. I'm with Sandy - you ought to do just fine on Tamoxifen!
Illimae, I don't have any suggestions for you except you'll probably want to see a lymphedema therapist as soon as you are healed enough. Sounds like you have a good plan in place. Your recovery should be easier with the Lx. Hope the rest of your chemo goes uneventfully.
HUGS!
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Alice, sorry you're having bad se's. Hope your do better with Tamoxifen. I've been taking it for 9 mos and doing fine. No noticeable se's.
Illimae, I found some Ace brand large soft touch ice packs at Walmart where Ace bandages are. They are bendable so I could wrap it around my boob covering the LX site and it also went under my underarm where the SNB was done. I iced it regularly for several days. Otherwise, I didn't have any trouble. Hugs!
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ChiSandy, I'm already in Cleveland, and I did get and wear a sleeve. The lymphedema specialist recommended it because she said it's best to prevent rather than treat.
The flights lasted about 7 hours total. The weather was awful in Cleveland with wind and sleet so we were diverted to Chicago (hi, dear girl!) but we didn't get off the plane -- waited awhile and then flew back to Cleveland.
I'm celebrating the Passover Seder with a friend and going back to Reno on Tuesday, and will wear the sleeve again.
My only complaint is that it's uncomfortable -- the fitter couldn't find a good fit because my wrist is at the smallest end of the range for the small size but my upper arm is at the big end. So it's very hard to get it high enough on the upper arm, and the bottom edge rubs against my wrist when I turn my hand.
I didn't get a glove or gauntlet because it would have been too expensive and I had to pay out of pocket. And my hand didn't swell up, so it should be OK?
I'm going to Israel mid-May and will definitely wear it for those flights -- they are BERY long from the US West Coast!
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Natsera, LympheDivas has a “wide band” option for the upper end of the sleeve. I pretty much forget I have it on except when I need to go to the bathroom, when I need to remove the gauntlet to wash my hands. Check out the prices on their site—really cool patterns too. I’ve never flown nonstop to Israel—just O’Hare-DeGaulle and then to Ben-Gurion. My NP and PT both told me never to wear just the sleeve without a gauntlet or glove, because there’s always the chance of finger swelling. I had a Juzo set when I flew to Amsterdam & Rome (and from Amsterdam back to Detroit—the Barcelona to Amst. and Det.-Chicago legs were short, with 1 hr+ layovers). The Juzo gauntlet was too short, didn’t cover my palm knuckles. I got finger swelling on the Amst.-Detroit leg. Next time I flew abroad I wore LympheDivas, and the gauntlet was just right. (My LE doc, when I told him about that earlier finger swelling, prescribed a Mediven Harmony glove, which was stiff and painful when I wore it for one day while housecleaning. LympheDivas gloves were too long in the fingers).
I’ve been invited to the home of a London barrister for Seder Monday night—the Inns of Court have reached out to Jewish members to host Jewish tourists. The Seder will be traditional but not strictly kosher (neither am I). But the Haggadah will be read in Hebrew, as our hosts are Israeli immigrants (though Ashkenazi). I hope I can mumble my way through—I read “placeholder Hebrew,” recognizing certain phrases and familiar-looking letters so I can try to keep up during services. Our synagogue, while still Reform, has added more Hebrew (and more songs, not just prayers) to the liturgy. We use a very contemporary Haggadah, with most passages being read in English (and both Hebrew alphabet & transliteration). I will pack it, so I can at least memorize the lyrics to “Dayenu” & "Had Gadya” and not make a fool of myself. (The host’s wife is a concert soprano. Oy).
Have a joyous Pesach!
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HI ladies, I finished my last DD AC chemo on March 24 and I will have either lumpectomy or masectomy sometimes in April. I am kind of concerned about the timing between neoadjuvant chemo and surgery now. Should I insist to have surgery as soon as possible? Thanks!
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steph...go with a breast surgeon oncologist. this is their area of expertise
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Hi Ladies - I had my follow up last week. All is good - PATH CR. I only had SNL. The pain is getting much better. I started working with a personal trainer who has helped me a lot with arm stretching. I was actually able to take my dogs to the park this morning!
I have a question for anyone who had chemo - since finishing chemo I have had some vision issues. I see those rainbow dots many times during the day with my eyes open and sometimes after finishing my walk (slightly elevated heart rate) I see some funky things like bright colors "dancing". I am going to call my oncologist because now I'm convinced something is wrong with my brain even though I am sure I'm overreacting. How does everyone else reign in the anxiety? I feel like I am doing a constant body scan.
K
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Good morning, LL ladies! I'm feeling a bit discouraged today. My LX and SNB were on 3/31. I never really had pain at the breast incision site - just sore to the touch and a bit numb. But the SNB site and entire armpit have gotten increasingly sore. Is that normal? My DH and I went away for the weekend to our timeshare. He played golf; I read and watched shows on Netflix. In other words, I rested. And still I was exhausted. Yesterday we visited with a friend and took her to lunch. I couldn't keep my eyes open on the two hour drive home and fell asleep in my chair once I got here. Is this my new life? Unable to do anything? I know it will get better but I'm not a patient person! I see the surgeon Thursday for my follow-up and pathology report. I'll see what he says then.
Thanks for your help and support!
MJ
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KLNiss, I had vision changes during and after chemo. I saw my eye doctor and found out that there were some benign changes in my retina and a little bit of cataract. Im 60, so im not surprised. He felt that these were probably normal signs of aging eyes. My prescription changed only slightly, so I'll just continue seeing him annually.
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MJ, this is not your new normal, but it is your new two-weeks-post-op. LX withSNB is major surgery and your body is still adjusting, so all your energy is being diverted to the areas of healing.
As for the increased pain, my money is on a seroma. Seroma is just a pocket filled with fluid, non-cancerous. It can be large enough to need draining, but usually they are small enough that the body will reabsorb the liquid. If you can hear or feel sloshing, it's a seroma.
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MJ - you are still less than two weeks from your surgery - I think it is pretty normal how you are feeling. I still used ice and Tylenol for the last week so mine has still been sore too. Today marks two full weeks and I think it is getting better - I haven't yet taken Tylenol today but probably will by the end of the day. I'm definitely not 100% yet, and still pretty low energy. My doctor did say it was fluid like mustlovepoodles said - she offered to drain it with a needle but she said it would absorb over time so I decided to let it do that.0
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Thanks, Poodles and Law. When you go through something new, you just don't know if what's happening is normal. I'll talk with the doctor on Thursday. I'm taking Tylenol during the day and take a Norco at night so I can sleep (since I can't sleep on my right side). I just got a care package from my daughter with DVDs, a book, a giraffe mug (my favorite animal) and face masks to refresh my skin. So sweet!
MJ
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