Stage 2 Sisters Club
Comments
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Sometimes I think we are all guinea pigs....sadness.
You want to avoid getting a sunburn. A hard massage would make me nervous.....although I have a friend with lymphedema and none of the traditional things have helped her. She is going to a chiropractor and is finding that, for her, that is doing some good. So it is, sadly, hit and miss.
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When I had my surgery, there was no one around here to go to for advice about lymphedema, so I did a lot of studying on my own. Here are some thoughts & tips I came up with at the time. I posted the following on an exercise thread awhile ago, so a number of the tips are exercise related. Maybe some of them will be helpful:
"First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad ‘luck'.
That being said, there are many ‘little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):
- No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway)
- Wear gloves when doing yard work, gardening etc.
- Wear sunscreen when out in the sun, bug spray when out with the bugs
- If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
- Carry your purse on the other side, also be careful when hauling around anything heavy, switch arms when dragging luggage etc. (at first I carried everything on the 'good' side but wonder if that contributed to me getting a hernia, now I switch off)
- No saunas (I also avoid manicures and massages....personal preference)
- Keep a healthy weight
- Keep hydrated, limit alcohol
- Don't wear tight rings, watches, bracelets on that arm
- When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session
- Mix up your exercises, don't work the same muscle groups every day, you may want to work with an experienced trainer (or PT) to help you construct a balanced program
- One thing I do want to add; after my surgery I was so scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me ‘permission' to get moving."
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Ruth...you are a wealth of knowledge and thanks for these tips! It's true that the surgeon just sent me on my way and said if it bothers you then I can order pt...well I think I have good mobility...my ignorance maybe helped me, as 2 days after lumpectomy, I was out in my yard fueling my fire pit with a pitchfork...until my niece and sister came out yelling that I shouldn't be doing that!! But I don't think I really babied it...if it felt ok I did stuff. Now, I am learning from bco friends certain things...especially wearing gloves when gardening, etc. to prevent cuts and infection. Sometimes the web pops up and stretching it helps...I am still on chemo, then rads mid June...I know we need to stay out of the sun, but I wondered about pool aerobics, walking in the pool and such...any ideas on being in a community pool during treatment ( bacteria infections?)....I was thinking of going there during the shade hours still covered up...?? Thanks. Rosie
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Are you doing Neulasta shots? If you are, I wouldn't worry about infections very much. I would check with my oncologist first though. With rads, I wonder if the chlorine might irritate your skin....again, check with your radiologist. It is a great idea to get some exercise during treatment, that is for sure!!!!! If you want some exercise buddies, check out the 'Last Post Our Daily Exercise' thread on the fitness forum.
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Thanks Ruth. Have you been lucky enough to avoid lympedema?
After a loooong winter being housebound for months, on the first nice day I went out without sunscreen. Before bc, I loved to garden and we have a lake cabin, so I'm usually outside all weekend. Not anymore. I guess I will have to seek the shade or wear long sleeves because my skin seems very susceptible to burning. I had 30 SPF suncreen on this weekend, but still noticed some redness on my affected arm. Maybe part of it was the heat. It was almost 90 this weekend - we're not used to that here it MN! And try to avoid mosquitoes, bees, spiders? Good luck with that, right? I hate wearing incest repellent. Anyone have any good ideas for something other than DEET?
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I have been lucky, knock on wood.....after awhile you get less freaked out over every single mosquito bite etc., but I am still mindful of precautions.
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I'm sure that's true. Thanks for the tips, Ruth. I'm doing research now that I'm back home and wired in. I know that I'm a nervous Nelly because it's my first summer after ALND surgery. On the upside, I decided that I need to buy a new swimsuit (so that lymph flow isn't restricted), a new bike (with upright handles and a comfy seat), some nice gauzy long sleeved shirts and just go with the flow. I'm not changing anything I do - just how I do it.
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I've had some success with this DEET free product. All Terrain Herbal Armor DEET-Free Natural Insect Repellent
Works well in evenings against gnats and mosquitoes but I swear nothing works on ticks.
We live in a wooded area and I am a crazy person constantly checking myself and dogs carrying these pests into the house. Just pulled one off my neck the other day and I was wearing long pants and long sleeves. ARGHHH!!!Regarding the above topic - I had 18 nodes removed and living on a farm I simply had to lift and use my arms. I believe it made a difference like physical therapy to keep circulation and movement. I had some cording initially under my arm but stretches above my head in a warm shower helped it.
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I think the only animal that I'm deathly afraid of is a wood tick!!! Man, I hate those things!!!!!!!!!!
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Yup - and freezing cold winters and snow don't kill them either. Hey - just saw this product which looks good too. see reviews
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oooohhhh...ticks! I had Rocky Mountain spotted fever back in may of 2012...honestly, symptoms were worse at times than chemo! The way I felt back then is how I thought chemo would make me feel...thankfully it wasn't as bad! My husband is a beekeeper so we don't normally spray our yard....I wear high rubber boots if I garden...and of course check carefully !!
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Those products look interesting. I've tried Burt's Bees because I don't mind the scent, but I'm not sure it works all that great. Our mosquitoes sure are big and plentiful this spring! They look like mosquitoes on steroids. And yes, the ticks are supposed to be pretty thick this year also. I scream whenever I get one on me...I'll never get used to those little buggers.
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Well, its was five years ago today that I began chemotherapy for stage IIA BC. My last visit to my doctor I noticed on the paperwork the words "Remission". First time in five years I felt uplifted when leaving her office. (She is a wonderful woman, and I am lucky to have her as my oncologist, but my hope is that she can retire soon because there are no new patients to treat) . In 2009, I found this site, and read a few posts occasional. (it was emotionally exhausting). I didn't want to dwell in the mind trips that always came after reading the stories and experiences of others. I had enough to deal with in my own little world, so I stopped coming to this site for four years. Just this year I began again, and for the most part have not had the emotional drain that I expected.
I can honestly state that I have paid very little attention to the "does and don'ts" regarding LE. To this day, I have not experience any indication of LE, and I don't know if that's because I fiercely wanted to get back to my very active and healthy life, without limitations or I was just lucky. Although I don't have the "healthy and fitness back to 100%, I know I will soon.
Likewise, I was out in my garden 3 days after my lumpectomy, soaking up the sun and taking care of my vegetable garden. Gardening therapy hasn't failed me in 25 years! There is something to be said about going your own way, and making decisions, although not the recommended norm, that have untold benefits. Occasionally I: drink alcohol, swim laps in the pool, lift weights, sit in a hot-tub, go without sunscreen, rough play with my grandsons, live life without limits or fear. For that, I have to be grateful for my BC diagnosis.
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Hi Lissee!
It's so nice to hear from a 5 year survivor! And so nice to hear that you are out there gardening and going strong without LE. There's just no way you could keep me out of the garden and the great outdoors. It's my happy place and I refuse to give that up! Keep on blooming my fellow Stage 2 Sisters!
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I have read about this product, but have not yet tried it. I make my own spray out of peppermint oil and alcohol and put it in a spray bottle.
http://www.malinandgoetz.com/body/bug-spray
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After a month I am still numb under my arms. My inner upper arms feel like I sunburned them. This is a very brief summary of what was found in the one node. The tapes are starting to come off the incision. I don't know if that means I can pull off the ones that have the edges up or no. Chest also feels like a light sunburn, but is also numb. Weird.
Final pathology showed a multifocal T2 ER/PR/Her2+ IDC (invasive ductal carcinoma) of the right breast with 1/3 SN+ (sentinel nodes) for a macromet. Final Stage IIb (mT2N1aM0). Left breast did not have any pathology and 0/1 SN contained disease.
I am leaning towards not doing the ALND, but it is a scary choice. I did a bilateral mastectomy mainly to reduce risk of recurrence. You guys have been a big help though.
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I imagine with HER2 positive that you will be doing chemo anyway, so I don't think you'd need to do the ALND at this point......just my opinion remember.
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missing - with a Her2+ macromet, not a micromet, I would be nervous about leaving your nodes intact, but as ruthbru said in her post, this is my opinion. Have you had an MRI or PET that included the axilla? A macromet is not clinically node negative. The feeling of numbness usually does dissipate, but it takes a while - the only thing still numb after a SNB, then later an ALND, is my actual underarm but I am only aware of the numbness when I shave. It took the better part of a year to regain feeling.
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missing - I still have some (minimal) numbness, just over a year out after 24 nodes being removed, right in the armpit area. That would be the least of my worries...but it is a difficult choice - 1 that you will ultimately have to make yourself.
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Saw the oncologist today to discuss chemo. She agrees that being triple positive and with how responsive it is to hormone therapy, that she felt comfortable not doing an ALND. That is where I am leaning right now.
IV chemo for 6-7 months. The pill will be 5-10 years. She said they used to say 5, but she believes that will change to 10. Also another chemo or therapy that will be injections into my port. She is going to print me a schedule and information. I have to have a heart scan first.
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Well, now you can get started & get it over with!
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You've undoubtedly already gone ahead in whatever direction you've chosen, but thought I'd throw in my opinion anyway...
I knew going into the mastectomy that I was lymph positive in my axillary nodes - so knew they would be removed. If they could have removed only part of them, I would have done that, but it wasn't possible. Because of the possible issues with an ALND (numbness is the smallest of them, IMHO), I (personally) would not have an ALND if at all possible to avoid. 0 -
gardegumby - hi! I favent seen you around in a while. Hope you are well!
Everyone - i have been MIA for a couple of weeks. A lot going on in everyday life. And again my email notifications vanished.
Dealing with old pain and discomfort in neck-shoulder area that never goes away and now seems to be getting worse. Will discuss with MO at next appt.
Sendings hugs to all.
Nisa
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missingmercury I'm glad to hear your MO say how responsive triple positive tumors are to hormone therapy. They have already put out results from a study recently that says 10 years of some sort of hormone therapy is recommended. I've been focusing more on the aggressiveness of Her2. I'm on ACT-H. I have 4 AC treatments every 3 weeks. Then T-H every week for 12 weeks. Then Herceptin every 3 weeks for another 9 months. This is going to take forever to get through!
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Hi Nisa (waving). I retired last year and don't spend as much time on the 'puter as i used to.
I hear you about the shoulder/neck pain, as i have that too. I'll probably have to succumb to surgery at some point. Blech!!! I've had enough surgery - really do NOT want any more!!
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I just found out I have a frozen shoulder (oh and plus osteoarthritis and a bone spur). Anyone else have this - what did you find to be helpful, if anything?
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bc101 - I've been struggling with my shoulder for a long time. Yes to all of what you've got. They want to do a shoulder replacement. I'm holding out. Just too many surgeries in the last few years. I also cannot take aspirin or NSAIDS, so use heat, massage and acupuncture for the pretty much constant pain. What do they suggest for you?
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Oh. My. God. Shoulder replacement surgery? NOOOOO!!
They said to try taking high doses of NSAIDs, but I don't want to do that. Also suggested cortisone shots, but I'm at risk for lymphedema, so no to that, too. My doc said it usually resolves in about a year. When did your pain start and how did it evolve? I'm really hoping this isn't going to be a long term problem. Wow. So sorry you have to go through that. I don't have constant pain - just if I happen to bump it or move it suddenly the wrong way, or try to bend it backwards. It's gotten better than it used to be, but still not good.
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ive been keyboarding one way or another for 60 years. In the eighties I dislocated my collar bone. I felt down a very long escalator in the nineties erenching my shoulder and in the 2000's for some unknown reason decided to do a major landscaping job including building rock walls using BIGASS rocks. There were a frw other onjuries interspersed as well. As you can see intelligent care of my body was not on my to-do list. Anyway, according to the bone docs there isn't any space or cartilage left between the ball and socket. It hurts most of the time, but really hurts, as you say, when moved suddenly.
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Okay, so your shoulder problems are due to more than just MX. Mine really started after my surgery and I didn't have any shoulder issues before that. I was a hairstylist for 15 years, did a lot of manual labor while renovating houses with my hubby, and then made a career change thinking that working on computer would be easier than doing hair (ha!). I've done lots of gardening but I didn't move any big ass rocks like you. I suppose it's a cumulative effect over the years, but I'm thinking the BMX is the culprit in my case. My doc says these things can develop spontaneously.
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