Lumpectomy Lounge....let's talk!
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Thanks for all the comforting wishes, ladies! I will get through this--it’s minor compared to what so many others have been through. Even though the letrozole SEs have been a bummer, I know they’re relatively mild. I won’t consider switching unless & until the pain gets worse and my weight keeps increasing.
Good news on my labs--all w/in normal limits, so the edema is due to external causes (too much dietary sodium in Italy, overuse syndrome, physical stress, long flight, and reaction to the pain from the heel spur) rather than my heart, liver, kidneys, or brain. Glucose was a tad high but still normal (98), but it was post-prandial (had breakfast before my NP told me to come right in) rather than the fasting 93 I had pre-op. NP says no need to re-take a1c, but my MO will probably take it, my CBC and my lipid panel tomorrow at my scheduled visit. The Lasix is working--down to 197 this morning. Still a little foot swelling and lots of point tenderness, but the NP says the latter is due to the skin and soft tissue having been stretched--some Voltaren or arnica gel should help with that. As to the heel spur, will have to perform Sat. morning sitting down....in my ugly sneakers. Meanwhile, no more bacon with my eggs, lox, or salumi/charcuterie till the edema is gone. I can handle that. (I have a very stingy hand with the salt-cellar or grinder anyway).
My MO messaged me that she's "looking into" approval for Prolia. She assures me that I will not be getting Zometa tomorrow, due to the "flu-ey feeling" side effects that'd keep me from driving up to Milwaukee to perform on Sat. morning. Because my glucose is normal, she probably won't prescribe Metformin. Will see tomorrow what letrozole did to my LDL and triglycerides--if they're too high we might consider Crestor (the statin that's easiest on the liver, pancreas & muscles). I won't take natural statins like red yeast rice, because their purity & strength aren't FDA-regulated. Not sure what else they'll measure--estrogen levels, maybe? She did message me to keep taking the letrozole (D'OH!)--and I wouldn't be surprised if she breaks the news to me tomorrow that I will probably be on it or some AI for ten years, not five.
Must say I'm a bit (but not very) disappointed that the Lasix hasn't been more dramatic. Not peeing urgently, just a bit oftener. Turns out I bought orange juice unnecessarily, because I had no trouble swallowing the potassium capsule (I don't need the extra sugar, anyway--and Bob & Gordy will gladly drink it). I guess I was expecting the reaction my mom had after her NP gave it to her in the office via injection and we then drove home--she had an "accident" before we were able to get her into her bathroom and her "nose hose" connected to the O2 concentrator. She was mortified, but when I told her about the expressions "peeing like a racehorse" and "shit happens," we both had a huge laugh together.
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Oh gosh, Dara, I don't walk in the heat! I drive up to the mountains for hiking, where it is at least 20 degrees cooler or more. Sometimes 30 or 40 degrees cooler! Sunday I hiked up to a lake at 9600 feet, and I frequently go above 10,000 feet. When I'm home (and since I don't get myself up very early), my steps come from walking around the house doing things, or going outside briefly to move a hose or feed animals. At night I'll walk in our long dirt driveway when it cools down to 80 or below, which sometimes is not until 10 pm or so. There's enough ambient light that I can see well enough. I listen to audio books or podcasts. When I go to Bakersfield I walk at the "ghost mall". It is a mall with no large business left in it except for a movie theatre. Most of the small businesses are closed at the time I go, and there are very few people. But it does have air conditioning! There's always a way to keep moving! My Fitbit helps keep me honest about how many steps I've taken. I make it a priority in my life, because I believe exercise is the fountain of youth.
It was great to meet you, Octogirl! I found out a lot about scuba diving from Octo, and it is definitely something I want to try. We will get together for camping one of these days.
KD, I'm glad you've made your decision. We'll all be here for you!
Traci, I'm curious to hear what your MO says. It definitely is stressful to deal with all the information and differing opinions. Good luck!
Sue, just saw your post. Yes, I have only one more infusion to go, next Wednesday, August 10! Then of course, side effects from it for a few weeks. And then I can start actually recovering from the effects. Judging by the experiences of others, I'm sure it will take me a few months to get back to my normal fitness level for hiking and backpacking. Through this whole ordeal, I've learned a lot about the value of patience.
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Just a couple of comments (and yes--you ladies are hard to keep up with!)
LTF--you look *great*!
KDTheater--I'm late to this but just my experience. My first surgery took out an 8cm x 6cm x 3.3 cm chunk. The second took a little bit more. As one friend pointed out, that's larger than a deck of cards. I never considered any kind of compensating surgery--yes my misbehaving hooter has a shark bite out of it but it's nothing you'd notice in clothes unless you were looking really hard. And I decided not to have any lymph nodes taken. Just did not want to deal with the possible SEs.
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Interesting, Inger--my BS never said anything about the SLNB being “optional.” Perhaps it was because my bc was invasive and yours was in situ. (My friend who had bmx for her DCIS and ADH was able to keep all her axillary nodes intact because the sentinel nodes were confined to the breast and biopsied only after the breasts had been removed). My sentinels and “hitchhikers" were almost at my armpits. Even though I did end up getting minimal-to-mild lymphedema, in retrospect I wouldn’t have rolled the dice and skipped the SNLB--how else would I have confirmed my tumor was stage IA?
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Hi all - trying to catch up on posts after 3 weeks of traveling and preparing for a visit from my 94 year-old mom next week.
Welcome to all of the new folks (new to me at least). So sorry for the reason you find yourself here, but certain that you will experience the knowledge, compassion, kindness, humor and overall grit possessed by those on this thread. I am grateful to have found this place and the support of these wonderful women!
Sandy - sure hope that Lasix kicks in to give you some relief. I haven't had a chance to catch up on your trip to Europe, but hope you had a fantastic time!
Jill - love your picture and your hair! Hoping you turn the corner on residual fatigue soon.
Trish - hoping you are 100% soon too.
KD - I agree with Peggy. You made an informed decision. Now you can move forward with confidence.
Dara - so sorry you have to do chemo. Still, as those before you have said...not easy, but doable. You will have the confidence of having done all you can to kick cancer's butt. We will all be here for you.
I am now 5 weeks post my last radiation treatment. Feeling great and I'm done peeling. Fortunately, four weeks into Arimidex generic and the only SE I have had is mild to moderate hot flashes. So grateful we installed air conditioning last month. (You usually don't need it in Seattle). Anyway, just a reminder that while many have significant SEs from AIs, many don't. Hoping I remain lucky
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Moondust - all that outdoor cooking! I tried an Ina Garten roasted chicken and arugula salad recipe last night and since the recipe was to cook it at 500 degrees, I put it on the BBQ to avoid setting off smoke alarms in the house. Here are a couple of picures. Chicken, delicious. The country bread beneath it that was to be cut into croutons for the salad? #nope
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Hi all...My oncology appointment today was cancelled. The doctor wants to do the oncotype testing , so now I won't see her until August 29th. Bummer. I guess it's better to do all the testing, than take an educated guess.
I wonder who dropped the ball? My surgery was June 29... Seems like they should have sent it out for testing already.
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Not sure where to post this but has anyone had experience with alternative medicine for stage 2B ?
or can you tell me where to find it.
thanks so much
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Steph53, have you looked on the Complimentary/Alternative thread on this site?
Sandy and Ingerp, my BS said pretty much the same for me with the SNB. She said if nothing made it to the SN, there was no need to go further. She stopped there and path showed they were negative. Also, I think it's interesting that my MO is saying that more and more oncologists are placing less emphasis on staging and more on grade with the approach to take. In my case, I thought I was home free with Stage 1A and node negative. I'm glad they are now able to do more specific testing, especially for intermediate oncotype as that is what put me in the "high-risk" category. I'm still pretty much in shock, but feeling positive that I'm doing what needs to be done. Glad your labs came back good. It's scary what foreign diet, walking, and I'm sure the long flight can do to our bodies, especially legs and feet.
tsoebinn, a similar problem happened with my onco test. My BS actually ordered it right after surgery, but insurance had a 2 week wait window. They didn't tall the BS so it wasn't ordered until I started calling up to get my results. Then I came back intermediate and needed to wait for a second genome test to be performed. Seems like a year since me dx! It's ok though, far better to have the right information to make the right decision! Good luck. Waiting is the hardest part!!!
katzpjays, that chicken looks incredible! I'm impressed that you could get that on the barbecue.
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Sorry, one more thing... did anyone do chemo with no port or pick line? Was going straight into veins an option for anyone? I'm reconsidering my choice to try without either. Thanks
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Dara... I'm a bit freaked out. Surgeon told us no chemo, no radiation, maybe no tamoxifen. But now who knows everything may change with this Oncotype test from the MO.
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Traci, your MO is usually the one to decide what "chemical" you get post-surgery. Usually with the concurrence of the tumor board. I suspect no one bothered to send out your biopsy for Oncotype testing. I requested it. And with Medicare it wasn't a problem. it is expensive. But I think it is another clue as to what post-surgery treatment(s) you might need. I just can't imagine you not going on Tamoxifen or an AI. Virtually everyone who has ER+/PR+ does. As for radiation - who knows? But it has to have rather blindsided you to think that they want the Oncotype test run - it does raise the spectre of chemo.
Take care!
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Steph53, I don't know of anyone who did alternative medicine. Sorry.
HUGS!
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Peggy - I love the Lambrusco from Trader Joes! Is that where you get it? It's the perfect summer refreshment!
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Sloan, that's too high brow for me
I drink Riunite Lambrusco. I definitely prefer low alcohol wines. I think I've had Trader Joe's but can't remember. I don't often shop there so it would have been a one time thing, I suspect. I'll have to try it again. I drink it year 'round.HUGS!
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Inger, my BS never said anything about the sentinel lymph node biopsy being optional either. And, frankly, I wanted to know if my cancer had spread and that's one of the best ways to determine that.
HUGS!
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The Lasix is definitely kicking in--and not only am I peeing well, but “peeing pale” (which would make my voice teacher smile, because to him that is the barometer of being well-hydrated, a necessity for healthy vocal folds). Am trying to watch the sodium: plain seltzer (homemade from filtered tap water rather than bottled mineral water), unsalted nuts and veggies for a snack, going to make salmon filets for dinner, seasoned more with herbs, lemon and EVOO than with sea salt.
Ordered a home pulse-oximeter per Bob’s urging (one of his colleagues just lost a 35-yr-old son to an asthma attack). He had said I would have to leave one nail (finger or toe) “naked” because the meter can’t read through a nail “appliqué.” Well, before I had my mani-pedi yesterday, I had only two surviving gel overlays when I went to the doctor; and the index (one of the intact gels) was where the nurse put the pulse-ox. Got a clear reading right away. Turns out that nail “appliqués” are those glued-on crystals or bits of gold or silver used in “nail art” (applied mostly on acrylics); and most of Bob's patients tend to be from a socioeconomic group who are into that. No danger of that with me--and my nail salon refuses to do that stuff anyway. But while I too am asthmatic, the pulse-ox is really more for Gordy: my attacks are confined to respiratory infections, VOC fumes, and severely-high-pollen days, while Gordy’s are more frequent and also triggered by exercise and cold air as well. (We both get them from giggle fits too--at Blue Man Group, "Book of Mormon" and the Nathan Lane revival of “A Funny Thing Happened...” we kept passing the inhaler up & back. I’ve had one ER visit for asthma, over 30 years ago; but Gordy’s actually been hospitalized a couple of times. We brought back four Ventolin inhalers from Italy, because despite his own Rx, Gordy keeps dipping into my stash--too often I’ve reached into my purse and found the inhaler’s digit counter had gone from 200 down to nearly 0 without my having used it. Other kids want wine, T-shirts, or other souvenirs as presents from their parents’ foreign vacations. Gordy prefers inhalers.
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Dara - I did IV chemo, and I'd have a port if I could have a do-over because my vein burned on chemo #3. I have tiny veins. It's better now, but at the time the vein turned brown. I still have a brown spot where the IV went in. The "good part" about the IV was that I didn't feel like a cancer patient 24/7 looking at and feeling a port. The bad part was the burning and the blood draws. What did your oncotest number turn out to be?
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Peggy- The Trader Joe's lambrusco is only $5. As matter of fact, I just might take some of it camping with me next week! It's very refreshing.
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Peggy... Starting to lose faith in my team. I'll stay patient, but feel a second opinion will be in order.
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Sandy - Is 98 high for blood sugar? I know the range is 75-105 or so. I think mine was 96 fasting this last time. Dang, that's not a borderline thing, is it?
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tsoebbin - I changed MO's when he couldn't explain things I was reading about in articles and talking about with people in this forum. I love my new MO. He's a hematology guy, and that's what I need now.
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Sloan, Trader Joe's just came to Spokane. I'll make a run there and try their Lambrusco!
Traci, I just made an appointment with a Dr Cutter (an MO) with the Summit Cancer Center on Mayfair at Central and Division area. I see him Monday. I'll let you know how I feel about him. I can see why you might want to get a second opinion. It's hard if you don't have faith in your team.
HUGS!
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As to wines, I wish they didn't have alcohol. Sadly, even 30 years later, they still haven't made a non-alcoholic wine that tastes as close to its regular counterpart as do non-alcoholic beers or decaf coffee beans do to theirs. I really don't like getting a buzz, since I am a control freak. But when it comes to low-alcohol wines, I steer towards Germans, especially Rheingau & Mosel, French Sauternes or Barsacs, or small quantities of Italian sparkling Moscato (other sweet wines--vin Santo, Muscat Beaumes de Venise, sweet sherry, port and madeira--are high-alcohol because they've been fortified with brandy or other spirits). Even the off-dry Kabinett rieslings come in at about 7%, which is lower than some beers or sangrias. The rule is that the higher the residual sugar, the lower the alcohol and vice versa. It's the fermentation of the sugar that creates the alcohol. But I can't abide Asti Spumante or Lambrusco, nor am I a sangria fan (remember the pre-bottled Yago Sangria of our college days?). They remind me too much of the old Boone's Farm, Annie Green Springs or Paul Masson Crackling Rosé (of Neil Diamond's “Cracklin' Rosie" fame) we used to guzzle in our misspent youth. Except for late harvest and a very few fortified wines (both in very small quantities, like an ounce or so), my tastes definitely run to the dry (and for sparklers, Brut and Brut Zero). I never put sugar in my coffee, either (to the horror of baristas in Italy when I'd order espresso), nor milk except for cappuccino. Everybody doesn't like something.....
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Sloan, my doctors have never been concerned when my glucose hovered around 100 (most lab reports give 75-105 as the “normal” range, whereas this one gave a range of 77-99). And my fasting glucose, except on Lipitor or after the stress of knee surgeries when it was in the 120-130 range for a week or so, has always been in the low 90s. I’m actually surprised that 90 min. after a breakfast of two jumbo fried eggs, black coffee and a piece of low-carb high-fiber whole wheat toast it was only 98. Years ago, before my first visit with a new PCP in hopes of getting Redux, nobody had told me to fast. My glucose was 138. The doc thought I was officially Type 2, told me to avoid sugar and was about to prescribe Metformin when she casually asked, “you did fast first, right?” Well, I knew I was about to be placed on a diet, so I made a pan of crescent rolls and between a bedtime snack & breakfast I ate four of ‘em. Went in the next day after being NPO for 8 hrs, and my glucose came back 92. False alarm!
But I think the new trend is toward redefining “pre-diabetic” as well as “metabolic syndrome” (the triad of high BP, glucose and LDL/triglycerides) downward. Docs never used to treat BPs with systolics <140 or diastolics <90, and 120/80 was “ideal.” Now they’re shooting for 110/65 or 70 as “normal,” especially in anyone with high non-HDL cholesterol or borderline glucose. So that could be the reason for that stricter “normal” range for blood glucose on my lab report. (And as to a1c, some doctors are considering anything over 5.0 as prediabetic, when it used to be 6.0).
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Dara
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Sandy, seems like with many of these tests that the numbers are moving targets. What's okay today means you're dying tomorrow. Lovely. The doctors look at my cholesterol totals (210-220) and immediately want to put me on statins (which I cannot and will not take). Then I point out my HDL of 95 and they retreat. It's always been high. And as you well know, there are ways to play the tests anyway - eat a really really healthy meal the night before and your cholesterol is all happy.
Your wine palate is much more sophisticated than mine. I like sweet tasting wines. I also do not like to have a buzz. I drank beer in college. NO ONE drank wine unless they were a wino. But I'm a bit older than you and pre-hippy-pot generation. We drank and slept around
HUGS!
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Peggy, you & I both have freak-of-nature HDL levels. Back in 2013 (between knee replacements) I was placed on Lipitor because my total cholesterol was >250. But when after a couple of weeks my thighs began to ache and my fasting glucose went above 120 , my PCP told me to discontinue it. He calculated my Framingham score (10-yr “cardiovascular event” risk) was less than 6%. 6-week repeat tests showed my glucose back down to 93, and my HDL at 95. (My mom’s was also that high--had she not been a smoker for 50 yrs, she might still be alive today, instead of passing 10 yrs ago at 85).
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Sandy, I held on for about a year on Lipitor then my legs ached and felt like electricity was running up and down them (which I still have, thank you..NOT). But at that time Lipitor was going to cure every ill known to man. DH landed in the hospital from his statins. I don't know that my blood sugar was effected. I only know that my ratios are terrific. Mine HDL runs from 65-95. I didn't know there are others like me out there! Glad to have company.
HUGS!
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Sandy, my last two glucose levels was 104 but I wasn't told to fast so no concern. I had my post op appointment today and my pathology report was benign!! She said I need to be careful because I am at risk for another hematoma.
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