Lumpectomy Lounge....let's talk!
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Carrie, I, too, had trouble with the abbreviations on this site. Look at the top of the page on the left about a 1/4 of the way down under the blue subject headings, There is a tab for abbreviations. It helped me so much.
Annie
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Annie60 thank you for that helpful information!
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BadLuck I wish the best for you in your decision making. It's all so overwhelming and difficult, at least for me, to trust that I am on the right path. I have upcoming appointments with my oncologists and now that it's "all over" I have so many more questions. It's almost harder now than when I was in the thick of it, surgery, radiation, etc. Now I'm dealing with side effects of tamoxifen, and from what I read, there are a lot of options that may be better for me.
Hugs,
Carrie
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Salamandra thank you for your words of encouragement. Every little bit helps. I get cards and gifts from people still, and I want to cry every time, because it means so much. At least some people understand that it's not over for me, and probably never will be. I will always be fearful that the cancer will come back, or that I have it somewhere else in my body. But I have to learn to live around that fear, not make it the center of my life, so I can be there for my kids on the daily. I love them so much and they deserve to have all of my love and attention. I am grateful for this organization, for the support of everyone on here.
Hugs,
Carrie
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Hi Carrie - I too have terrible side effects from my hormone Anastrozole. It's like I'm in a constant stage of PMS! I'm extremely sensitive & always crying. But the worst & most dangerous side effect is bone loss. It's know to cause osteoporosis. One gale on BC.org told me she had 2 collapsed vertibraes within 2 years of taken them & became disabled. Doctor wants to put me on another dangerous drug for osteo with another list of terrible side effects. I hate drugs & with take the risk. Anyone out there know of exercises for building stronger bones
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Weightbearing exercises, especially those that stress the long bones (tibia, fibula, femur) are key. Walking, hard cycling are great, so long as you are fighting gravity. (Swimming, water aerobics & rowing do nothing for the bones). If you can do "ballistic" exercises (jogging, jumping rope, vigorous dance--especially polka and hip-hop, skipping, impact aerobics) so much the better. (I can't because I have knee implants that could come loose).
Have you had a DEXAScan yet to assess your bone health? My first one, at 64, was the day I started radiation, showed I had moderate osteopenia, aka weakened bones. Two years of twice-annual Prolia shots, and supplementation with calcium citrate, D3, K2 and magnesium improved my osteopenia to "mild-to-moderate," with one "femoral neck" measuring within normal limits. The list of "terrible side effects" is not the same kind of list as with AIs or chemo, in that the Prolia side effects are uncommon, whereas the AI side effects are typical.
I lost a dear friend at not quite 71: she was a heavy smoker, diabetic, had COPD and had osteoporosis (she was tiny and Asian) despite having been a fitness devotee (including kickboxing) into her mid-60s before taking a spill on her icy metal front stairs. At 68, she had a breathing crisis that after being stabilized in-hospital, sent her to the adjacent rehab pavilion that could offer high-volume oxygen. When the nurse didn't come quickly enough after being summoned, she got out of bed herself to go to the bathroom, and down she went. She broke her hip so severely it couldn't be surgically repaired or replaced. After 6 months in a posh rehab center, she had to sell her three-story townhome in an exclusive neighborhood and move with her husband into a single-level ranch in the 'burbs that was accessible for her walker & wheelchair. But she got worse and worse, and during her final hospitalization, the by-then necrotic hip sent her into sepsis. She did NOT take any osteoporosis meds nor supplementation.
That's why I'm treating my bones with care. Because I have GERD I can't take an oral bisphosphonate; I had one infusion of the liquid version but with my lousy veins it was a miserable experience that gave me bone pain and faux-flu for days. I switched to Prolia shots with no side effects. There's a very slight risk of osteonecrosis of the jawbone, but so long as I don't get extractions or implants, I'm good. (In fact, today I got measured & scanned for Invisalign braces to move my teeth to a more stable position, with a prettier smile as a bonus).
So if you still insist on avoiding bone drugs, at least hit the treadmill, elliptical (vertical), stair climbing or dance class and start popping the aforementioned vites & minerals.
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ChiSandy - thank you so much for all that great information. I signed up for a strong bones class this month but they are all filled & wont have an opening till July. I have an elliptical that I use every day for a half hour to an hour. I lift 5 lb weights in each hand for 5 minutes several times a day. But will try to find better bone strengthening exercises for the long bones as you say. Please tell me how much mg & IUs of the vitamins I should take.
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Well, I'm not a doctor so I can't prescribe, but I can tell you what I take. According to most doctors, postmenopausal women should take 1000-1200 mg of calcium a day. That's one TUMS Ultra or a couple of TUMS EX. I can't absorb calcium carbonate well, due to my anti-reflux med, so I take calcium citrate in the form of Citracal Petites, which contain 200mg each. (The regular size have 500mg each, but they're too huge and get stuck in my throat). I should take two 3x/day, but I rationalize that because I consume dairy I can get away with two in the morning and two at bedtime--with just enough calcium absorbed from the TUMS to make up the difference. Two Petites also contain 500 IU of D3, which I supplement with a 2000 IU D3 gelcap in the morning. (Had taken 5000, but both Bob and my primary say that 2000 is plenty). 500 mg. of magnesium at bedtime (also helps with muscle cramps) and 100 mg. of vitamin K2 (not plain "K")--which may also have anti-tumor properties.
Remember: repetitive, impactful, weight-bearing (even better if ballistic) exercise is the key! (Probably a stairclimber or actual stairs is better than an elliptical, rower or bike--which is non-impact).
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Thanks Chi! I heard to have doctor check your number for D3. Mine was 26 & she said that was normal. But on another thread the girls said it should be between 40 & 50? I know vitamin D3 is more important to strong bones than the calcium from what I read.
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So this is my first time on a blog! Had a lumpectomy in my left breast on 3/14/19. ER+ and PR+ Her2 negative.
Cancer was 4mm and they were only going to remove one node. So after surgery I had 5 removed because the dye attached
to these 5 and the 4mm is now a 10. Have a meeting on the 29th. How soon did everyone return to work after the surgery?
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Hygienist-I had a lumpectomy as well, 1.2 cm, and 3 nodes removed. Well...I wasn't old how long to take off for recovery, so I just assumed I could go back to work (I'm a teacher) the following week. Boy was I wrong. I went back and was in a lot of pain, mainly from swelling from seromas. I had to go back and have them drained several times over that week, so everyday I was calling out sick because I had more swelling. It could have been because I'm terrible at taking it easy (adult ADD), so I probably did too much too soon. Looking back I should have really rested, like been in bed for at least a couple of days and then not too much more for a couple of weeks.
Hope you heal faster and easier!
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Welcome Hygienist! It is very important that you rest - not bed rest but babying your Lx side and arm. You have had major surgery and your body is working very hard to heal everything. I was retired but caring for my handicapped husband. I was having to lift him (200 lbs) way too much. This is not good. If you can, take at least a week off. If you are needing pain pills other than Tylenol, then probably you should be home. No lifting anything heavier than a gallon of milk on your "bad" side. Do the stretching exercises.
It also would help us immensely if you would fill out your profile with all the details AND make them PUBLIC. That way we are reminded of the pertinent information we need to help you. I'm sure you don't want to write it every time you post. Do tell us where you are, too. There are possibly some BCO gals near you. Get togethers are fun.
Since you had 5 nodes removed, be especially careful to watch for lymphedema. Check out the various articles here on bco about it. There is often a difference between the original diagnosis and the surgery path report. They are guessing (usually) on the former.
HUGS!
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Hygienist----Might you be a dental hygienist, as I am? If so, you may want to count on a few weeks off or maybe at least a shorter schedule. I had a lumpectomy on left side in Jan, was told to plan on a week off -which is suggested for light office work. This was followed by a seroma due to too much too soon. The position of the left arm, though not weight bearing, creates tension in muscles that need to rest and heal so my BS provided a note requesting another week off and half days for a bit after that. It was a blow to the budget but great for healing. Best of luck to you
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Wish I had found this site 4 years ago...had my lumpectomy in July 2015, followed by 16 rounds of radiation, followed by Tamoxifen until I had total hysterectomy in December 2017, now on Anastrozole. Happy to provide inspiration and answer any questions I can help with :-) Again, a group like this would've been a god-send when I was going through this alone (husband seemed content in "they removed the tumor, you're fine" mentality).
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Better late than never, right Armywife? I’m glad you found this forum now. I stumbled across it when I was diagnosed two years ago - the wise women here were my saving grace! I’ve not stayed very active lately but just found my way back. I missed several of the ladies very much!
How are you doing on the anastrozole? I’ve been on it since July 2017. I have a number of SEs but nothing I can’t put up with, given the benefits. I’ll be having another bone density scan next month so we’ll see how my osteopenia is doing.
I hear you on the husband who doesn’t want to participate in the discussion. My husband was even critical of my spending so much time on this site but I didn’t let that dissuade me. He refused to discuss anything about my diagnosis or treatment with me. However, he did go with me to all my appointments, which I appreciated.
We also have an active breast cancer support group here in our mountain communities. Some members are many years out; one is very new. It’s great to have people who know exactly what you’re feeling who will listen and can offer good advice. I quickly learned to respond “fine” when people asked me how I was - I could tell they really didn’t want to know! I am doing fine now, for which I’m very grateful.
MJ
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Welcome, Armywife_68! As Tappermom said, better late than never. We're so glad you've joined us, we're sure your story and experiences will be helpful to so many. And we hope you find support and encouragement here as you continue your own treatment!
The Mods
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BadLuck
I had a DEXA scan when I was diagnosed before they put me on anastrozole. I had to push for the DEXA with my MO, but I wanted a baseline. I ended up with osteoporosis. But I had many of the risk factors--small frame, long term steroid use for my asthma, etc. etc. My MO wanted to put me on zoledronic acid. When I read up on that I said no way--I have huge allergies and was concerned about it with the IV administration etc. So I started researching more natural options. I am exercising with weights at least 30 minutes a day 5 times a week. Mostly that is just walking, but I am putting on leg and wrist weights and carrying additional hand weights while walking. I also started the COMB protocol supplement regimen based on a study I found. This is what I am doing:
https://www.hindawi.com/journals/jeph/2012/354151/
Table 1: Combination of micronutrients (COMB) Protocol for Bone Health. COMB protocol for bone health (1) Docosahexanoic acid or DHA (from Purified Fish Oil): 250 mg/day (2) Vitamin D3: 2000 IU/day (3) Vitamin K2 (non-synthetic MK7 form): 100 ug/day (4) Strontium citrate: 680 mg/day (5) Elemental magnesium: 25 mg/day (6) Dietary sources of calcium recommended (7) Daily impact exercising encouraged 0 -
BadLuck,
Also I am trying to eat Mediterranean diet as much as possible not only for bones, but for the cancer:
ttps://www.medpagetoday.com/reading-room/acrr/generalrheumatology/75908?xid=nl_mpt_DHE_2018-10-26&eun=g1237212d0r&pos=1&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%202018-10-26&utm_term=Daily%20Headlines%20-%20Active%20User%20-%20180%20days
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BadLuck,
Last thing-- I have not yet done as it is a bit of a far drive from my house, but I have looked at this and still plan to try to do-- it is the BioDensity machine. There is some good research on this as being effective. I have not gone for the demo, but I did speak with the woman there about pricing and their results. And they have had good results with their clients--she gave me some numbers over the phone. If you are not in these areas listed, you should see if something similar or the same machine is available in your area. I called the manufacturer's sales rep who was very helpful in telling me all the places the machine was.
https://biodensity.com/locations
So the good news is there are lots of more natural options available that have no negative side effects. The bad news is that most of this would not be covered by insurance--the supplements and the BioDensity treatments--and both get a bit pricey. But for me was worth it to stay with more natural alternatives and not risk side effects and possible horrible allergic reaction.
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Mystical - Thank you so very much for all the excellent information. My NP friend told me about the the Medittarian diet as being the best diet for good health. Im going to look into another strong bones class coming up & see if there is room for me. Do you know anything about taking Tamoxifen or Evista instead of other AIs for hormone treatment? Hopefully they don't have the same side effects as all the osteo drugs have in destroying your teeth
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Osteo drugs don't destroy teeth. In very rare cases, Prolia & Zometa can cause osteonecrosis of the jaw, but that risk is lessened by avoiding extractions & implants until 6 mos. after treatment is over. My MO is concerned that strontium can compete with letrozole for the same metabolic pathway and make the AI less effective. But she's onboard with the K2, D3, dietary calcium and magnesium.
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Hi All, just hoping to get some insight into whether or not to call my BS. I had my lumpectomy about 2.5 months ago, and I just completed hypofractionated radiation schedule(16 whole breast plus 5 boost treatments). I'm noticing where my lumpectomy scar is there is a lump there...I'm assuming this is scar tissue and normal....is it? Anyone else have the same?
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It'll be scar tissue, but do have either your RO or your BS take a look, just to clear away any worries. I
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Hello all-I had a lumpectomy In Nov 2018 so over 4 months ago. Finished radiation in Jan and started Tamoxifen. I was feeling really well but in the last couple weeks wake up in the morning feeling like my scar where the lump was removed (outside top left breast) is tender and my breast feels heavy-like it’s pulling down and causing pain. The pain isn’t horrible but makes me uneasy. I did some arm exercises a week ago and wonder if it’s just building strength back up or something else. I’d like to continue trying the arm exercises but am feeling really cautious. Any advice or thoughts appreciated
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Carebearzzz, I get that, too, and realized it's because I'm finally sleeping on the surgery side for hours at a time. Gravity causes a slight swelling, which makes the nerves say BOO! It goes away once I'm upright awhile and moving around. It's just a mild annoyance, but I think I'll mention it at my next MO appointment next week.
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My radiated breast is still feeling very warm, and I got a rash on the other side. When I wake up I can see the sheets/pillow marks on it. I'm almost 3 months out from radiation. I think they just really do a number on the internal tissue, and the healing can take a long while. But it never hurts to shoot a message to your rad. onc.
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At my one year checkup with my BS, in January, I asked about the aching, sore, tender feelings I was still having in the breast and under my arm. She commented that " that tissue has been through a lot this past year". I took that to mean continued healing was taking place, and apparently it still is! Some days I notice it more than others.
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Thank you all for your experiences. It helps me feel better! Has anyone done strength training for chest/arms? I want to start that but am cautious in doing so.
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I’m scheduled for 3 lumpectomies on 4/12. So relieved to be moving forward with this diagnosis! I’ll have 2 on the left and one on the right. Sleeping is going to be tough!
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