Lumpectomy Lounge....let's talk!
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Grazy, I hope you get some rest one of these days!! You are a trooper. Peggy and Sandy, congratulations on being BCO VIP's!! Well deserved kudos to you both.
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Simsoka, Ask your Breast Surgeon or nurse navigator for a recommendation. I'm sure there are several that they are used to working with and can recommend. Don't forget to make sure they accept or will work with your insurance. Mine even arranged the first consultation, then when it came to surgery they had it all figured out and the scheduling was simple for me. Best, MJ
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lmenken, I'm older than you (59), but my tumor was ER+/PR- with an Oncotype of 23, so it was chemo for me. No discussion. I had already done my research and knew that's what it was gonna be, but it still was kind of a shock. I didn't find chemo to be terrible. I never threw up. I looked great, probably due to the steroids. I did lose my hair, but I got a really great wig. I'm about 8 months post-chemo now and my hair is about 3" long and very thick and curly (my hair is normally very straight and fine.) Usually, the first 2 weeks after chemo were when I was the most fatigued and low. But by the 3rd week, I was back in the saddle and felt pretty good, other than everything tasting like tree bark and paper clips.
I guess my biggest issues during chemo were the changes in taste--not only taste but texture--and the fatigue. It is real. I ended up in the hospital with sepsis 3 days after the first chemo--yeah, so much fun--but I got better and it never happened again. I did run fever a few times and ended up in the ER, but with no signs of port infection they just rehydrated me, gave me Tylenol and an IV antibiotic just to be safe, and sent me home. I got a stomach virus about 3 weeks post-chemo--that was the only time I vomited, but it was bad enough to send me to the ER for 4 bags of IV fluids. Ugh.
Would I do it again? In a heartbeat. I have 2 gene mutations which are going to try their best to kill me. I needed to throw everything at this. As my MO said, you only get one chance to get it right. I hope your chemo experience isn't too harsh and that you can find moments of joy from time to time.
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Molly, thank you. I am very honored.
HUGS!
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As am I. Thank you, sisters, and Mazel Tov, Peggy!
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Sandy, thank you. You definitely deserve VIP status!
HUGS!
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Peggy and Sandy- congrats to you both! You have advised, commiserated, shared, cajoled, hugged, cried and laughed with so many! You are both VIP's in my book and I thank you both for your wisdom, grace and humor over the past year or so!
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I am so happy for Sandy and Peggy!!!!! Congrats!!!!
Grazy, goodness!!!! Maybe life will slow down ONE day? Lol!! Unfortunately, I tried a glass of moscato and was up ALL night, so I guess the alcohol has the opposite effect on me, I'm taking ambien now lol!
I can't keep up with all the posts!! Welcome to all of the new people!
I just haven't been the same since the hysterectomy, but I cut back dosage on effexor and am sleeping better now, so don't feel like a zombie anymore. I still struggle with the on and off nausea EVERY day since I started the tamoxifen, but I'm determined to stick with it and hope it gets better? Thank God hot flashes are better at night since starting the effexor and turmeric
I've been terrible about reading updates, then taking my pill and passing out in the bed between 6:30 and 8pm. The full dose of effexor just made me not care about anything for a while and I went for almost two weeks without even turning on my tv
For all the newbies, don't feel bad about the worrying. Once I had a treatment plan in place and knew all the info, I was much better. I just had a down turn with surgical menopause at 42 that spun me into severe depression. We will all worry for the rest of our lives, I'm just trying to LEARN to deal with it and learn to live life again with those thoughts in the background instead of the first thing I think of in the am and the last thing I think about when I go to bed. I don't want this cancer CRAP to take over my life!!
Hugs to all and hope I can start helping out more with the newbies. I just got depressed every time I read the boards for a while, but know how much you all helped me feel better when I was newly diagnosed and want to be able to do the same for others. You all have been the best!! I love you all!!
Sandy, you made me feel SO much better. After rads, I didn't have anymore hair growing in my arm pit and was so used to not having to shave there anymore. I went to RO appointment and he checked me out and felt me up good. I made sure to shave under the OTHER arm real good!! That night, I happened to rub lotion further under my arm than usual, and discovered I had a thick patch of hair that had grown under that arm. I'm wondering what the RO thought about the smooth right under arm and the hairy, rough left under arm LMAO!!!!!
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Hi - I'm home. And I'm in bed with a glass of wine, that's about all you need to know.
Congratulations to Peggy and Sandy - well deserved.
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lmencken, I'm not in my 40's but am in chemo right now. I've had one cycle and will have my second on Monday. My MO spent a great deal of time going over all the risks, what the benefits are and then we wound up getting a third test to help make the decision. There are additional risks with chemo. I was told that of course there can be damage to major organs since the chemo will kill off good cells as well as cancer cells. But staying really hydrated, monitoring blood counts, and then all the new treatments to counteract SEs help. In my case I was first told the benefit was only about 2%-3% over no chemo. I'd decided the benefits didn't outweigh the risks. Then my Prosigna (similar to MammoPrint) came back that I am high risk for recurrence, so I'm doing the chemo. Certain drugs can be hard on the heart, kidneys, and liver. My MO also said that I will have a 1% increase change of getting leukemia. But with chemo, I have a 12%-13% better chance of NOT getting a recurrence of bc. It's a hard decision, but one that each person (and their MO) must make, and then don't second guess your decision.
My unbelievably sweet DH came home this afternoon with his head buzzed in support of me! I had no idea he was going to do it (and probably would have tried to talk him out of it) but I was so very touched that he would do that for me. He keeps telling me how great I look and I told him I'd loan him one of my wigs! :-)
Congratulations Sandy! I didn't see a notice about your award! I did vote for you as I'm sure so many others did. You have always had such good information for all of us. Thank you! Are the shots every 6 months? It seems that you're having quite a hard time with them. Are they for bone density?
Fightergirl, congrats also! I'm envious that you're all done. I know I'll get there, but it does seem like a long way away.
Simoska, so sorry about the additional surgery. I've heard that it's not at all uncommon to have to go back for additional removal. Good luck.
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And Peggy, Congratulations also! That is so great that you are also a VIP! I just read all the quotes and they are so true as well. You are the backbone of this thread and are always so upbeat. You are greatly appreciated!
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Cannot find anything about Peggy and Sandy being VIP's- not surprised about it- thrilled FOR them but...want to read the quotes...what am I missing?
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HH, go to the home page for Discussion Boards and scroll down past the two topics and you'll see Meet the VIPs.
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Hello, Just checking in. I did just add info from my pathology report. I have been so tired. I haven't been up to doing to much.
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DaraB and Mustlovepoodles...thank you for your honest info. Leaning toward chemo so I appreciate everyone's experience.
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Simsoka, I had to have a reexcision also. I was looking pretty good after first surgery but the second one gave me a huge indent which caused my nipple to face left rather than straight. My breast surgeon said she will be happy to give me a referral to a plastic surgeon. I just wished I had gotten a consult before just because I don't want to go through any more surgeries and maybe they could have done some reconstruction that day. That being said maybe they wouldn't want to do anything until they were sure I had clean margins the second time or until after radiation which sometimes causes breast shrinking. You might ask your breast surgeon for a plastic surgeon referral or your bs may be able to answer your questions. J
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HappyHammer: if you click on : All topics this is what you will see: (the VIPs is in the last line).
All Topics
Welcome to Breastcancer.org
Info & Resources for New Patients & Members - Please No Posts!
16 Topics 64 PostsMODS and ADMINS only topics here. Please see all the other forums below. Thanks.Latest post:Acknowledging and honoring our Community
93 Topics 3,713 PostsShare accomplishments, milestones, goals of community members, family members or yourself. Just finished treatment? Just got married? Watched your child graduate? Ran a big run? Been a huge help to members in our community? Let's honor our members here!Latest post: BCO Community Member-Nominated VIPs! by Moderators 11 hours ago
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The Zometa infusions (or Prolia shots, for those with better insurance) are given every 6 months for bone density, to make up for the bone thinning that estrogen-deprivation (whether natural or pharmaceutical) causes. (In other words, it’s not just for bone mets, though it can delay, stop or even prevent them). Bob suggests that when these first 6 months are up I take Boniva, an oral bisphosphonate taken monthly. I replied that with my GERD (which is not just heartburn but has in the past been actually erosive) it’s not a good idea. He says, “So you’ll have heartburn for a couple of days a month.” Really? I thought I was through forever with feeling like crap every month. Besides, erosive esophagitis can become esophageal cancer....which unlike bc is not only always fatal but a gruesome way to go. I am dreading my visit next week to my primary for the bloodwork & EKG needed for my cataract and thumb surgeries and my flu & Pneumovax shots--he will hit the ceiling when I told him I allowed them to give me Zometa. (He’s dead set against bone drugs, believing instead in weightbearing ballistic exercise--the ballistic part is a nonstarter for me as I have artificial knees and was warned by my orthopod that jogging, running or jumping could cause them to loosen. So do I want my osteopenia to become osteoporosis by virtue of my doing nothing, get possible jawbone-rot and thighbone fractures from bone drugs, or have to get revision surgery for failed knee implants--with all the risk of infection and potentially fatal blood clots that entails? Oy).
Lovinggrouches, as a veteran of depression I can tell you that nobody can say for sure which antidepressants will work for whom. Decades ago when I had PPD, that was true for tricyclics and Desyrel, the two classes of antidepressant that were a step up in efficacy from and less prone to dangerous (even potentially deadly) drug-food interactions than MAO inhibitors, which were like stomping a cockroach with a Sherman tank. I went through two tricyclics before settling on Desyrel, and was told that it could take 6 weeks to see full therapeutic beneficial effects. (That was a long 6 weeks). Fast forward to today, where the first-line antidepressants of choice are selective serotonin (SSRI), norephinephrine (SNRI) or dopamine (SDRI) re-uptake inhibitors--they prevent those respective endorphins from coming unstuck from the receptors in the brain and going back into the bloodstream where they don’t do any good. But the same rule holds true for them too--what works for one person with depression, even similar age and health profile, may do squat (except produce side effects) for another. I was lucky in that first Prozac and then Redux (which antidepressant dexfenfluoramine was combined with the appetite suppressant phentermine to make a “happy” weight loss drug) worked for me right off the bat (I hadn’t been depressed in six years, but I told my primary I was depressed about my weight--a weight I’d kill to be at today).Then when Redux was withdrawn for damaging heart valves, and I was in-hospital recovering from brutal leg-fracture surgery, the rehab medicine doc put me on Effexor--which for me was more like “side-Effexor” in that it made me anorexic and dysphoric. So it was back to Prozac, until studies came out disproving its value as a weight-loss drug; my son’s shrink told me about Wellbutrin, which controlled cravings so well it was rebadged and sold as the twice-the-price Zyban for smoking cessation. I’ve been on it ever since--without it, what little dietary discipline I have would go out the window.
Now, there are some serious drug interactions between various endorphin-reuptake inhibitors and Tamoxifen, in that they block the enzyme pathway SERMs (selective estrogen reuptake modulators) like Tamoxifen use to clog up tumor cells’ estrogen receptors, and can therefore allow tumor cells free access to estrogen. Sadly, Wellbutrin is one of those contraindicated antidepressants, and had Tamoxifen been appropriate for me instead of an AI, I’d have had to switch to a different one. The ones of which I know that are not contraindicated for Tamoxifen are Effexor and Pristiq (the latter of which was so often prescribed off-label for hot flashes that it’s now allowed to be advertised for that purpose to be given to otherwise perfectly happy women). There may be a couple of others in that class, as well as the tried-and-true tricyclics and Desyrel. Ask your MO and psychiatrist which ones are okay to take with Tamoxifen, and see which one works best for your moods with the least side effects. If you are not suffering unbearable side effects but not noticing an immediate mood elevation, give it a few weeks before moving on to another.
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My Doctor asked me to have my PCP order a Bone density test done. Why would I have this test when I haven't started any kind of treatment yet? How is it done? Should I have this done?
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We all get it before starting adjuvant treatment. It is called a DEXAScan and it is completely non-invasive. You don’t even have to undress. You lie on a table and the scan camera passes over you. It takes images of your arms, spine, hips, upper thighbones and pelvis; and reports a score that indicates either normal bones, osteopenia (thinning bones) or osteoporosis (weak and fragile bones). Aromatase inhibitors, by depriving your body of estrogen, thin bones (which can happen naturally over time after menopause); SERMs like Tamoxifen have no effect on premenopausal women’s bones but can actually slightly strengthen postmenopausal women’s bones. (Another SERM, Raloxifene--brand name Evista--is sometimes used to fight bone thinning in women not taking estrogen-inhibiting-or-blocking drugs; it used to be prescribed as a Tamoxifen alternative but for the most part isn’t any more because it isn’t as effective against tumor cells).
Depending on your DEXAScan results, menstrual status and which anti-estrogen drug (AI or Tamoxifen) you’ll be getting, you may or may not be prescribed some sort of bone-strengthening drug, either oral, injected, or infused via IV.
Yes, you should definitely get this done. It is routinely done for all women past 65, breast cancer or not. Osteoporosis is a hidden health hazard, as hip fractures in the elderly can be the beginning of the end.
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Miles, absolutely have a bone density test. If you are put on an AI, they can cause bone loss. I'm unsure about Tamoxifen & bone loss. And it's a good idea for most women anyway. The test is easy so don't worry about it - just do it 😉
Thank you again to evrryone. I'm so honored to be a BCO VIP. I just want to help make this damned BC journey less stressful. And what marvelous friends I've made here. I'm so blessed.
HUGS!
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Hello all you beautiful ladies,
Those with SE's I send my hopes of relief very soon.
To all the newbies, welcome. These ladies are the best and are very helpful and knowledgable. Also READ THIS SITE... The explanations of all the different types and treatments are very well explained and once you know what the doctor is really saying, it is so much easier to make your decisions. They really throw a lot of info out there, but with BC it is really important to get things in the works as quickly as possible. Here in Canada they give a certain deadline for the doctor to get things going.
Dara, that is a really snazzy hat... Awesome look.
For me, I went on Wednesday to get my blood test and my white count was only .6. Which is way too low to get my treatment... So when I arrived on Friday for my treatment, I had to take another blood test to see if it had improved... I was up to 1.7 which was .5 over what was needed to do my session. So yesterday was my second session of Adriamycin & Cyclophosphamide (Procytox). Everything went well. My BFF was my ride and she came back to pick me up and fixed lunch for us both. Then I drove home from her place and slept all afternoon. I woke to my husband coming home with a pizza. Yes I ate it and I have had awful indigestion all night. But that seems to be the only SE aside from an itchy scalp ( I still have all my hair). I figure that is advance notice that it is getting ready to fall. I am looking forward to getting a government paid Brazilian (if it goes that far) as I have always been chicken to try it...
Good luck to all !!!
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Elizabeth, a "government paid Brazilian"... you made me laugh right out loud.
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lmencken, if you do opt for chemo, know that in most cases, it's not as bad as we imagine. Please do join us on the chemo thread as I think you will feel less stress and can ask any question at all. We are all ages and all situations. One woman is even pregnant while going through this, and many are still working almost every day.
Miles, one more addition... the reason we have the bone density before we start anything is that the MO wants to have a baseline. They want to see just what level density we have before to compare once we start treatment. They will monitor density closely and then recommend additional meds if they see changes. I've had 3 hip replacements already (started when I was 41) so they couldn't scan my hips.
Elizabeth, I know you're in Ontario, so do you not get the Neulasta injection post chemo? I wonder if they will prescribe it now that you're getting so low with WBC?
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Elizabeth, HAHAHA!! Keep that sense of humor. It will help. Let us know if you like have a government paid Brazilian
HUGS!
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Thanks for the info Sandy. I did quite a bit of reading up before starting the effexor. I was scared with all the negatives about how hard it is to get off of it, I'm better since I cut the dosage down from 75 mg. I started out taking five beads out and I'm down to taking 15 out, I'm not a zombie anymore. I do get angry from time to time, but it has greatly improved my night sweats And I'm not wanting to cry every day. There are so many meds that you can't take with tamoxifen! I have to take ambien now to sleep because I can't take the tried and true benadryl anymore since its high on the list of interfering with the metabolic pathway. I'm taking a chance with the turmeric since its on the low interaction list as it is. Sandy, you are always so informative. I appreciate you and am glad I nominated you for VIP. Congrats!!! Cataract and thumb surgery? Goodness gracious!
Dara, I'm so glad your doing well on chemo and love the pic!!!
Elizabeth, glad your session went well and blood work was better!
For all those having breast surgery, I had lumpectomy and reexcision. Had quite a bit taken out. Guess I'm glad I was a double d before surgery. I can still wear the same bras, but I have a dimple in the side of my breast and it has shrunken since rads, so it is probably more like a D now and the cup on that side is a good bit bigger, but I manage so it isn't noticeable under my shirts. I do have one breast noticeably higher than the other, but opted for no further surgeries. My Dh don't care, he just picks at me about having one perky and one droopy boob lol!!!!
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LG, glad you're starting to feel a little bit better; at least, you're moving in the right direction. Hang in there!
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I can't remember who asked about how the breast will look after a lumpectomy, but my surgeon said you could always do a fat fill to puff up what was taken out. My breast looks fine as my tumor was less than 2cm so I didn't have the fill. The excision line was right at the areola, so I don't even have a scar. I have a dent where the tumor was taken out, but I decided not to fill it because it looks fine. So, there are lots of options.
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VIP's in the house! That's terrific, but we knew you two were terrific already! Congratulations Peggy and Sandy!!
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Yes, Dara, I give myself Nuprogen shots for 7 days after a treatment. My MO had prescribed a dose of 300. But he was on vacation this first appointment and his replacement upped the dosage to 480. We'll see what that does.
So after writing about still having hair, it has decided it will vacate the premises now. It is not coming out in clumps, but I am finding it on my computer.
BTW... What is a BCO VIP? And Congratulations to Peggy and Sandy for getting it.
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