Lumpectomy Lounge....let's talk!
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Sandy, interesting that your MO seems to believe in the BCI test. Mine doesn't. I have no clue why the dichotomy between MOs on this. It's rotten when you can't get the brand of letrozole that works best for you anymore. I find Accord's anastrozole isn't as good for me as the other varieties I've taken. Hopefully, you will be a Five Year'er!!
HUGS!
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Hi,
I'm new to this topic and was glad to see the Lumpectomy Lounge tips. Four weeks ago a second mammogram and two ultrasounds found an unpalatable (sp?) mass on left side; biopsy resulted in invasive ductal carcinoma (IDC) diagnosis; path report came back ER+, HER2-. Two surgical consults both recommended IORT. Things have moved quickly and I've been scheduled for pre-op tests/procedures starting next week.
The oncological surgeon I selected helpfully explained the diagnosis and why IORT is recommended, followed by anti-hormone therapy. I'm basically clueless, though, about what happens next and in what sequence. Am also generally clueless about IORT post-op care. Surgeon seemed to think I could drive very soon after and go back to work teaching college students without taking medical leave -- but what's this about drains and numbness and nerve pain?
Am feeling anxious and tense. Anybody who's been through this willing to share?
Hugs ~
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Sandy, thank you for the clarification about what maybe posted here! I appreciate it. I am also going to ask my MO about BCI as I am not certain what she is basing her current 5 year recommendation on.
Cherokee Lady wishing you the best! I have not had IORT but am sure others who are experienced will chime in. If folks do not, you may wish to cross-post your message to one of the radiation boards. Welcome!
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CherokeeLady, you will be able to drive after a day or so (if you are not taking opiods for pain). But don't rush back to work. You will be having MAJOR surgery, even though it is out-patient and your body needs time to heal and recuperate. Not everyone gets drains. I didn't. Numbness. That goes with lymph node removal that almost all of have done. That area must have the biggest conglomeration of nerves ever! They will be numb and they will send very annoying zingers every so often. So will your breast but generally the Lx site is far less bothersome than the underarm. Go figure. Have ice available, fill your pain prescription (though it is possible you won't need it), have meals prepared ahead of time, plan on pampering yourself for a week if possible. Don't push it! Do the gentle arm stretching exercises your team recommends.
Please also file out your profile and make your profile PUBLIC via the SETTINGS tab. Then we know your background, what you've had done or will have done. It is immensely helpful.
Keep us posted on what you decide to do and when. We're with you!
HUGS!
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Thanks PontiacPeggy. Now I know how to enter/edit diagnosis.
Hugs~
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Cherokee Lady. That's the most confusing thing here. Good going!
HUGS!
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CherokeeLady, another thing you should do is make sure you have enough tops & nightwear that buttons or zips so you won't have to pull anything on over your head--you might have limited arm mobility for a few days. (I didn't). My surgeon's NP told me I might get profound fatigue, so I should set up temporary sleeping quarters on my first floor on a daybed, sofa or recliner. (I didn't need to--was able to climb stairs just fine). I wasn't even given an opioid Rx--in fact, after the one push of painkiller into my I.V. when I came to, while in my post-op "roomette" I was given a couple of Tylenol--regular strength (325mg). I didn't drive till the fourth day after surgery, because my sis came in from VA to help take care of me (which turned out to be hanging out together and driving me). She left the morning of the fourth day (after we walked to brunch, the beach and back home--a little more than 1/2 mile--she headed back to O'Hare so she could go back to work the next day). That night Bob & I went out for dinner, and I drove just fine. My "work" by then was music--I did a gig in Rockford two weeks post-op. My singing partner & the club manager carried all my instruments for me.
One thing that may happen, about which you should not freak out, is starting partway into the evening of the day after upper body stiffness & soreness--like how you feel the morning after using the weight machines at the gym for the first time, with too high resistance. It's called "scoline syndrome" ("scoline" being the nickname for succinylcholine--the "sux" you hear on ER scenes in TV medical dramas). It's a powerful muscle relaxant administered in your I.V. after you've been "put under" so that you lie perfectly still on the O.R. table. (Movement is not a good thing when they're trying to find & remove a tumor a tad smaller than the diameter of a pencil eraser--especially a "non-palpable" one deep in the breast). A split second before the "sux" takes effect, the muscles of your upper body contract extremely forcefully--so that's what you'll start to feel about 24-36 hrs, later. It'll go away a couple of days later--if it happens at all.
IORT is given as a strong beam in the O.R. while you're "out," after the tumor & margins (and nearby sentinel nodes) are removed but before the incisions are sutured. For a small tumor it makes a lot of sense because the beam goes straight to the targeted and fully visible "tumor bed" without (repeatedly) penetrating healthy skin. There might still be some skin irritation as the mucosa of the tumor bed begins to repair itself--skin regenerates from the inside out and sometimes after radiation the dermis & epidermis don't make new cells fast enough to replace the ones that die off (we all have skin cells & hair follicles dying constantly, regardless of whether we've had radiation).
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Speaking of not pulling things over your head, I bought a front zip bra for the lx and it was helpful. Much easier to get on than my bras that fasten in the back.
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My BS didn't talk much about the after of the lumpectomy. Until I came on here I was pretty much unprepared for it. I had to scramble to get bras afterward. Thanks to the ladies on here, especially ChiSandy for all the helpful advice
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Thanks so much for all the constructive comments, advice, and well wishes! This morning it all means so much to me because, at 7:30am, the hospital had someone call me to "remind" me of an appointment tomorrow (August 14), another on August 19, and my IORT procedure early the morning of August 28! (the "remind" part is ironic, since I've not been informed ahead of time). The good news is I can manage my schedule for the first two and have nearly 2 weeks to figure out how to get home after the surgery -- a 2 hour drive.
Any other suggestions are appreciated!
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Cherokee I had IORT during my surgery along with 15 whole breast sessions afterwards. I don't think I was really affected by the IORT, more so with the lumpectomy and immediate reconstruction. I second Peggy with the front close tops and the front close bras were a must. You might find a fee months after the radiation that you get a little tight, don't be afraid to ask about PT if you do.
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Thanks for the tip, Mymomsgirl, about PT. I had not thought about asking to be referred to PT. Sounds like a good idea.
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CherokeeLady, you might want to "bookend" your surgery by staying in a hotel, motel or AirBnB near the hospital the night before and after. Nice to be able to crash nearby after surgery and order from room service (or pizza delivery). I had the luxury of living 20 min. from the hospital, with Bob taking the day off to be with me, drive me, and bring back Chinese food & frozen custard from around the corner. Not sure where in IN you live--is the hospital in Indy or Lafayette?
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The same day (yesterday) I learned the surgery date, I also learned we can't "bookend" the date at the Cancer Treatment Center's family house (issues related to husband's multiple chemical sensitivities and new carpet). Maybe we can find a room at a nearby hotel. Goshen is the Cancer Treatment Center I selected, and it's a two-hour drive.
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MCS is a real bear, CherokeeLady. I feel for you & your husband. My former neighbor/lead guitarist/law-office-sharer developed it after moving back to the exurbs and the 150-yr-old family home where he was raised. It got to the point that he had to run his practice from home via computer & videoconference because clients' & visitors' various scents (perfumes, deodorants, hair care products, fabric softeners, even newspapers) gave his lungs vapor lock--not to mention scents of other offices he'd visit. His specialty had been Workers' Comp, Soc. Sec. disability & personal injury; but he took that lemon and made lemonade out of it--he now specializes in disabilities caused by MCS.
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ChiSandy in the midst of reading your good counsel, also getting good ideas about Chinese food & frozen custard!!! Mmmm.
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Ladies, I know some of us (not me) use essential oils in many ways. The study linked below seems to indicate that using lavender for those of us who are estrogen positive and taking hormone suppressors (Tamoxifen or AIs) might want to discontinue its use.
HUGS!
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Something a little more reputable than The Daily Mail:
https://www.mskcc.org/cancer-care/integrative-medicine/herbs/lavender
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Perhaps Sloan Kettering is more reliable but the conclusions for women with ER+ BC is the same. Not recommended. And I have no reason to doubt the study from the Daily Mail. It seemed to be legit. Food for thought at a minimum.
HUGS!!
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Yup—according to the fact sheet my MO gave me about letrozole and my diagnosis, lavender, St. John’s Wort, valerian root, more than a tablespoon of flax seeds every now and then and all processed soy (anything more processed than edamame, tofu, soy milk or soy sauce) can be endocrine disruptors for those of us with ER+ cancers. And grapefruit (whole or juice) lessens letrozole’s effectiveness (while it can make anti-hypertension meds strong enough to cause blood pressure to drop too low).
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PontiacPeg, I wasn't disputing the study, just backing it up with a medical link.
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That's just fine. Some things need to have extra backup and this is one of them. I appreciate it!
HUGS!
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Sandy, let's go drinking - that's safer
HUGS!
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Sounds like a plan, Peggy! (You do know there's a "How about drinking?" thread, right)?
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I thought you'd be onboard, Sandy. You're a girl after my own heart! And I do know there's a drinking thread. I miss seeing you!
HUGS!
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Hi Ladies!
I had a lumpectomy and sentinel node removal 22 days ago. My wounds are healing well. My node insicion seems to be healing much better than the lumpectomy.
In the last week, I have awakened in the morning with my breast hugely swollen. My nipple looks like a big mushroom and it HURTS! If I wear a bra all night (I hate that), it is much better in the morning. It does dissipate as I go through the day and am active. I don't know if it is lympedema? or if it is normal to still have swelling 3 weeks in. I did not notice it until this week - which makes me think its LE (darn!). I had a video chat with the surgeon today which was a waste of time! He said he could send me for some PT but he couldn't tell much on video chat! (I wondered why we were doing it in the 1st place?? I see him next week) .. but I am an acupuncturist and my massage therapist are trained in lymphatic drainage. I am going to try that.
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Trained aromatherapist who conducts classes at local Cancer Support Community always warns about no lavender if hormone +. Before BC, lavender was one of my faves
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Hi CeliaC,
I also love lavender, is that one of the reasons that I got cancer?
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HI All, just wanted to ask a question for those who have had a lumpectomy/radiation: do you have random pains in and above your breast, like between the collarbone and the breast? My bones hurt when I press them, and my collarbone/ribs hurt.I'm 7 months post surgery.
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I have a question for all of us here on this thread: why don't we/they talk about ice? Are we not supposed to use ice packs? I LOVE mine and have not given myself frostbite, not even once. I just looked through my aftercare orders again and zero mention of keeping swelling down w/ice. It has even helped me sleep! Just wondering if anyone has heard differently!
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