Kiwi ladies who need encouragment, but all welcome.
Comments
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Hi Annette, Every single person who has ANY lymph nodes out at all is at risk for the rest of their lives of developing LE. This statement is a pure and simple fact. It is NOT to scare anyone but to make people realise where they stand. That said, I don't know exactly what a SentNode biopsy entails. I would think thats not OUT as such and so you wouldn't be at risk but I'm not 100% sure on that. Will have to check.
Your thyroid Doc is right about BP. The bare minimum anyone should do who has had ANY LNs out is :
NO Needles of any kind (unless in a life and death situation) ... No BP taken... Avoid heat or excessive cold, avoid ANY injuries - have antibiot cream on hand incase of nicks bites and scrapes. Avoid undue stress to the arm where it is overworked. No overlifting, especially what youre not used to.
Any swelling, heaviness aching or pain, you should see your GP immediately or if still under hospital system get a referral to get assessed for LE. With LE the earlier you deal with issues the better off you are.
I have LE in BC arm, and suspected LE in the arm on my non BC side. With my prophylactic surgery I will have added to the risk by the fact that a few lymph nodes may have been inadvertantly taken. Now, trust me, if you get LE you'll wish you didnt. If you ignore it you'll SORELY wish you didnt. It is a potentially life threatening disorder and you can get cellulitis at the drop of a hat. It has the potential to turn your life UPSIDEDOWN with all the rigmarole involved with bandaging wrapping sleeves gloves and gauntlets exercises and MLD (Manual Lymph Drainage) which you have to have taught to tyou. On the good side, and for those who want to remain vigilant, there are many things we can do to minimise that risk.
Even with uniboobers, there are fairly recent studies done that show both arms are "at risk" with nodes taken from one side. Theres more recent studies that show there are extenuating circumstances like some people can be more predisposed to LE because of genetics and other factors and that secondary LE (BC patients who develop LE is 2ndry LE) subsequently becomes more of a risk.
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Hiya Musical.
LE is a bother isn't it? I'm lucky in that I haven't had it again since my flare up last year- but still take precautions.
I can't imagine living with it everyday. Hope yours is under control.
Did you see my post on the previous page about my appt with the Breast surgeon? Your opinion on it would be appreciated- I like to hear how people who actually live with these decisions think- rather than just the opinion of the drs who only look at it from the 'outside'
Cheers,
kt
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Hi kt, hopefully I havent missed you and youve gone to your appt. already? I posted 2 hours ago. I have seen your post but I thought I answered it so I'll go back now and re-read. SOrry if Ive missed any question out. Be back ASAP. I'll deal with the acronyms later... lol.
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No worries
I did have the appt & was just wondering about a couple of points raised...
I'm a ditherer- takes a while to make up my mind, thinking of all the different scenarios.
Hard to make a decision where there's no going back. I really want to be even, not lop-sided but worry that
I'll just be creating more problems for myself! Crazy, eh...
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musical, how do they do a BP then, if you have LE, or where do they do a BP is more the ?. A sentinel node, they take one node i think and test, its the main node which informs them if cancer is present in the rest of them. it saves on the fact that of having to take nodes out unnecesarily( Excuse the spelling) but will do if that is called for.
Yes, i think it improved the comunication alot more having a moan and he knows that i do not moan to them at all, so he is quite happy i brought it up and was open about it. it was the nurses that were the ones were been a pain. anyway must go. hope your appointment goes well. love and hugs to all. i want to have a nap, but i need to keep awake so i will sleep tonight.
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OK I did miss your last post and I see youve posted again. Must have just gone off the boards just b4 you posted. I am so pleased kt you are weighing up all the pros and cons. Youre not crazy. This is the absolute best thing you can do, and don't push yourself. Dither as much as you need. Time is a great leveller and things will settle in your mind as you consider each thing. Get out that notebook and write 2 columes. Head one up the pros and the other the COns. Thats exactly what I did and I presented it to BS....lol after I read it out of course. It was very important to me to consider hubby and what he thought and he was brilliant, unlike some who are totally selfish about it.
Yes - bras DO ride up and they are a royal pain in the backside when they do that. Also its a major pain if you are an active person where that is going to cause major embarrasment. I'm not sure how it pans out with horse riding. However, there are some great options and this is going to be very much a personal thing for you to consider..Theres some absolute amazing resources on this site where people have posted all sorts of ideas if you are the type who would do sewing, and then there are great resources where you can see whats available for purchase. I'd bet youd have plenty of options in Auckland too. The Lymphodema forum and the living without reconstruction forums are really informative.
Heres what Ive tried so far... not the aah bras but those other ones...is it thin lizzies? (sooorry momentry lapse of reason going on here) Anyway I got the biggest size you could get cuz I didnt care so much about the cup size cuz you dont have to have huge things in there. I didnt want to have that tight feeling around me or restrict the flow of Lymph. You can get truncal LE too. (Perish the thought... UGGHH) Now, with the extra big size you actually get a little insert thingee which is BRILLIANT! Its not real thick but covers up a multitude of mistakes or other anomolies. I use it in combo with some other "innovations" Ive come up with... like foam filled foobs that Ive sewn and might not have the most brilliant shape. These pads hide those errors LOL. I also use them in some sports bras I've modified, but they are a little tight with the band. Then theres some other loose bras I use that have a kind of circular peice sewn in to hold a foam insert.
Some days NOTHING works and I just ripp em off and hubbys great about it. Long as no one comes.
One thing I'll say. For me, I just CANT STAND ANY WEIGHT on or going over my my shoulders. I love that light feeling of not carrying around the weight. The rap is if you dont have that weight, your garment is likely to ride up. I understand now, there are some other garments where they have a whole top with pockets sewn in so you can have your foobies placed therein. Some of these garments are especially for truncal LE and others are as loose as. If you had the proper weighted but smaller prosthetics then that is a workable solution as you wont have the bra straps digging in but you'll have things staying in place much better.
Yes - Im the same, I didnt like being caught out without the prosthesis on if there were visitors or something, and even though I live rurally which certainly helps, Im still not out of public view...ie I walk down the road every morning. In the winter where here things can get pretty cold, youd have a nice poofy coat on and nobody would know the difference. That part was GREAT! and even better now LOL Up in Auckland you don't wear those things as much as it's warmer, so it would be harder for you to get away with it I suppose. Another thing I did when I was a uniboober was I'd have my "one ton boulder" (LOL) on standby...so if anyone came I'd quickly shove it in place. So I'd wear my bra of course but just go without prozzie.
Acronyms HTHs = Hope that helps.
I also struggle with them and actually asked the Mods about a neat thread someone had ages ago dealing with all these. Its here:
http://community.breastcancer.org/forum/131/topic/773727?page=1#idx_1
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Annette. BP is taken on my calf. Blood tests from my foot. I'll be coming back about the Sentinel Nodes because I've misunderstood something which I need to get clear.
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Cheers Musical. You are a wonder!
I certainly have a lot to mull over...
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And I'm glad, midnight, that ralking to the dr helped
oops, that was meant to be talking not ralking
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I am leaning more to the prophylactic mx- it just gets rid of the problem! ie. the indecision as well as the inconvenience of being lop-sided & the worry of a new BC there....
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Yes for me there was a high risk factor. I lost a 1st cousin mid 30s and my sister at 54 to this monster. Dense breasts and I could sure do without those future mamms although Ive heard of people having mamms AFTER mast. OUCH!!!
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Sorry for your losses Musical. My grandmother died of BC- they never found the primary.
I can't imagine having mammos without a breast. Ouch indeed!0 -
Kt thx. Theres not a day where I dont miss my Siss. I loved her soooo much and we were very close. Im sorry about your Grandmother. Gosh thats a stumper. They didn't find the primary but they Dx her with BC? Still with my VERY limited knowledge I guess thats very possible with all the different types there are.
Annette. Heres a link to me and my very dumb question
(oh well) in a thread I just started concerning SNB.http://community.breastcancer.org/forum/64/topic/804275?page=1#post_3539291
Please read what the ladies are saying as it will inform you of your situation. You are at risk even with 1 SN removed. Binney is an amazing lady who is extremely knowledgeable and helpful. She only had 1 SN removed and has bi-lateral LE. There is kira and Carol and others who post on the LE forum who are also extremely knowledgeable and really helpful with their research. These ladies deserve medals for the work they do. Some of them have got together and made a website called "Step up speak out" (SUSO) which has great information on all things LE. It is greatly recommended reading.
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kt just last night I noticed a sore-ish patch down my BC side under my arm, at the back of the top of my arm and a bit of my shoulder. Reckon it was my Miracle bra or what ever they call it. FUnny sometimes Im really good with it and other times my bodies just goes NAH. Anywayz this a.m. when I went for my walk (in the dark) I wore my very loose bra with no foobs.... and since Im not going out it wil lstay that way lol....lovely. No soreness now, and all good.
You take your time with that decision, because as you know theres no turning back. When you do decide though, let us know. Another thing Im really pleased about, is I havent had resconstruction. Im NOT sorry because Ive heard a lot of horror stories about it and my body had had enough of all the drama let alone more anethetics and so on. The more surgery I can get away with the better off I am.
Musical.
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thanks Musical, i am going out trucking today, need to get out of house. we were conducting job inteview today,. but have cancelled it, due to the fact that he rang me to ask where about is the area in relation to Manakau in Auckland, it said, PALMERSTON NORTH on the add, he is a long way from us obviously, and the other day he said, he had his Class five, today, he said, he is only class 2, still working to get stage 4 and 5, well that not good for us. After that i decided to go out with hubby, flaming time wasters. i will read yr link later on as very interested in it, thanks so much dearie.
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Aww Annette that should be lovely for you. Have a good trip. I should go out with my hubby sometimes too but its a bit different with you guys coz you can do it easier. Me Im out in the country and have to connect up unless hubby comes by and picks me up or something,. Yeah stupid unreliable people. grrrr.
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Hope you're enjoying your day out, midnight.
It would be hard to lose your sis, Musical. I know I would miss mine.
My Grandmother was Stage 4 at diagnosis- her eyesight was affected (optic nerve I think) and it was in her bones, & I think went to her brain. So she didn't have breast surgery- but of course they could tell it was BC from biopsies of affected areas I guess.
Well, had a call from the insurance people. They don't cover prophylactic mx unless you have one of the BRCA genes. I haven't been tested so its a no-goer. Annoying because there are other genes out there that are undiscovered that cause BC, not to mention that having had BC once you have a higher risk for it...
So I will ask the surgeon to refer me to the Dr she knows in the public system I guess.
Well' I'd better get on with my jobs....
kt
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Thx for the update kt. My siss was Stage111c ...when dx. Hers was almost the opposite to mine. At the time she was only offered herceptin AFTER 6 rounds of AC chemo. She should have had Herceptin from the get go. Her HER2 status was +++ (UGGHH) extremely aggressive. I was considered for gene testing and had a meeting with the genetic people, but they "looked at my case" and in the end I wasn't accepted for testing. Apparently it is very expensive to do and they gather a certain amount of data about everything, to see how many ducks line up I suppose..
Well it looks like that door is closed for your insurance. All the best for what you decide on and that it would go smoothly for you.
LOL jobs? What are they??? LOL I'm feeling lazy today.
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That's rough Musical. Did she get the full year of herceptin? - that was an issue wasn't it, pharmac not funding it etc.
My jobs are cleaning the walls before I start painting the kitchen & hall walls tomorrow. And the usual feeding animals, collecting kids, housework etc!
Nothing too exciting....just a bit of this & that. Keeps me out of trouble for now
Well, back to it. Have a good afternoon (it's lovely & sunny here, after yesterday's storm)
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Kt coming up 7.5yrs ago I lost my sister. From Dx to her passing was 18ths. By the time they gave her herceptin it was basically too late, even though it worked to start with, but because she was so ill she had to take a "drug holiday" as they call it. Then the cancer took over. It was HORRIBLE and just talking about it now feels pretty raw. Yes there has been an issue with funding and herceptin. Not that long before my sisters dx you couldn't get funded at all. I HATE this disease.
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Musical try the ambra razor back bra from farmers. It is like a boob tube (less pressure) with straps that are soft and close to the neck like a cross over. I've got them in lots of colours and they are so comfy.
Kt I had my mx three weeks ago with recon. Before hand my surgeon said that in his time he'd never seen a woman regret having it done, but had seen some regret not doing it, if that helps. It really helped me to hear that as I was recommended for rads but chose the mx instead.
Xx kk0 -
Hi girls.
We are back to cold & rain
Yesterdays weather was too good to be true...Our pump has packed up (last night) so now we have no water! I have someone coming out to look at it later...the joys of being on tank water...we managed to not run out during the drought, which was wonderful. I have stacks of dishes need doing & I miss my morning shower.
Kiwikid, it sounds like you are pleased with your mx & recon- its always good when you have no regrets over your decisions.
I hate agonising so much over the prophy mx decsion, but I gotta do it- that way hopefully I too will have no regrets
One thing the surgeon did do is order me a tumour marker test- so that will be interesting to see the results next week. I haven't had one since the markers started going down after starting my new drug regimen. And by then I hopefully will know my mind & let her know if I'm going to go ahead in the public system.
Well, I'd better get on with the painting. Hopefully the water will be back on in time for the clean up or I will be lugging buckets of water from the barn...
Have a good day
kt
Edited to add: Musical, I hate this disease too. I think its harder to watch someone that you love go thru it than go thru it yourself ((hugs))
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Haven't posted much lately. Friend is in last stages of BC unfortunately and it has really got to me. Sometimes I feel really bad that I have managed to come so far when others who had a better prognosis become stage 4.
Yes Kt today is yuck, where did yesterday go. My sister and I went for a walk and while we were having coffee the rain started so I bought a cheap umbrella from one of the many junk shops on Dominion Rd - very handy.
Bone scan went OK yesterday tech couldn't see any change so hope she's right.
Big hugs to all.
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KK thanks for that recommendation. Next time I'm near a Farmers I would like to take a look. In fact I will do a google and see if I can find an image.
Just been to my LEist and Im sitting here with my arm wrapped. UGHH. I've had a flare and been trying to deal with it for a month or more. LEist did a test on me 2 or 3 weeks ago which involved putting some "sticky contacts" on my wrists and hands and wouldn't you know it.... flippin rash. I thought it was the sticky fingerwraps from wrapping at 1st then I clicked when my Left hand started getting a rash in the same place as RH. So I didn't carry on wrapping until these idiotic itchy lumps went away....and that took ages.
Oh kt hope your pump gets fixed very soon! you don't need to be hauling buckets. Hey what exactly is the procedure when they do a tumor marker test? Do they take bloods or what? WOuld appreciate info on this, coz if I heard that phrase when I was "in the sytem" I don't remember it, but Ive seen it very often on BC.Org.
Words cannot even begin to describe how painful it was to watch my sister die, and to know the pain my dear beloved and aged mum would have to endure from that time to this day. My eyes are tear filled as I write this. It will always be raw. CANCER SUCKS BADLY.
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Hi Musical. My onc does CA15-3/CA27.29 tests every now and then but has told me that mine actually have never been raised even before my mx. Said if the did go up he would be worried but for lots of people they are not accurate. You probably had them done when you had blood tests.
Yes cancer sucks - really feeling it. News of my friend has really knocked me.
Big big hugs.
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Thx Alyson for tha info. I'll be writing that down and next time see DOc, will ask. Im sorry about your friend. Whether it's friends or family on the receiving end or the giving end or BOTH as it is with me, Cancer is STUPID all round. One of my sisters closest friends has never gotten over her passing. It deeply affects close friends.
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Annette where are you? How did you get on with your excursions yesterday? My hubby said he saw about 8 kingfishers the other day when he went out the rata straights. Awww wished I hadve gone too. I loooove kingfishers. Hadn't seen any for ages then just since the rains we've seen them again on the power lines :-) . Too bad about that beak ... lol ... I'd still love to pat one.
We've got a last years baby blackbird that came from a nest in our garden. We've watched it grow up from an egg lol. It comes and feeds just inside the back door. It's a cheeky minx and mustve got it's head caught in something coz for ages it had a ring of feathers missing around it's neck. Now it's as sleek as with an attitude to match. A while ago it came "in" for it's feed as usual but it was a bit windy and a plastic lid flew off the table and it got a fright and flew up into the kitchen window. I had to catch it, and boy talk about WILD. It bit me and sqwarked and carried on. Then I offered it some meat and it spat it out....what an ungrateful tart! It never forgave me for ages, but now it cant help itself and says "IM BAAAACK". It rules the area around our backyard, and it even beats its father up and the thrushes. Mostly I wont give in and feed it anywhere biut the backdoor. The thrushes have their own windows they get fed from. The male thrush eats from my hand but we didn't hand rear him or anything. Birds are neat and these ones always make me smile even though I tell them off for fighting sometimes lol. .
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I'm sorry about your friend Alyson. I hope her final journey is peaceful, and filled with love from her family & friends.
Bugger cancer...
Musical, oncs don't usually like tumour markers- too unreliable & cause to much unnecessary worry. But I think they are just another tool. Not to be given too much weight, but I know , thanks to my GP, that mine were high 2 years ago (and hadn't been previously). Its just a blood test.
Well- I've done the undercoat in the hall. The pump is fixed & I have water & its time to collect kids.
Cheers,
kt
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Hi I am here, yes i went for good truck ride out , we went to levin, it was lovely just going out. Had a lump of steel to deliver that was ment to be in Palmy on monday, from south island and then went picked up timber for the south unit to take with him. That would be nice to see the king fishers. you should go with him if the accasion arrises, we let the Drivers take their wives with them, but they have to ask, and depends onn the freight, if there is alot, we donot alllow them to, as they need to keep moving, without been distracted, but a light day yea, don;t know how yr hubby gets on with the bosses letting him take passengers. its fun tho. tho hubby has to stand behind me and give me a shove, that truck is particuarly high and the steps apart too much and today i am quite sore in the rib and shoulders with holding on to get up there. I can get out ok. just climbing in.
Alyson, very sorry about yr friend, it is so sad when they get to this stage. yea it seems bad when i have seen so many people with lower grade cancer, only to end up stage 4 and sicker, i was a grade three, but others stage one and grade one, end stage 4. cancer sucks alright. well i am nackered today, going out lovely, but i am always nackered the next day. i used to get into those trucks about six years ago like it was nothing, now i am like about ninety. not as though it was years ago that i was doing it every day, now i have to have help getting into the truck. see you later.
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Musical it looks like the bra in this pic though this one if of knickers http://www.ambra.net.au/underwear/bodybare/bodybare-low-rise-bikini
I have white, pink, teal and black. Now that I see they aren't on thei website I might get a few more in case they stop stocking them, they look a bit odd on the hanger, but lovely on.
Alyson sorry about your friend, cancer sucks for everyone affected by it. I'm an only child and I really feel for my parents. I think it's hard on everyone. May she have a peaceful time with lots of love.
KT I'm not sure I'm at peace with my decision, but I've made it and it's done and yes I miss my breast but I'm pleased I've done it. I'm sure the grieving is normal, I'm feeling a bit blue but I think part of that is just wanting my hair to grow back so I don't link like a cancer chick anymore.
I'm sure you'll do what's right for you. If you're talking about it you may have already decided. Let me say this, I do not regret it. Xx0
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