CALLING ALL STAGE I SISTERS
Comments
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I think we can all agree we hate the "BC journey" comments.
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Purple32 i agree also with your post, why oh why do we have to deal with people who are so insensitive, we are all so different. x
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Not all agree scottie!
I have a friend with BC that calls this her pink jouney....thats fine. Its not MY pink journey, I can tell you that !I resent ppl who call it negative not to feel that way. I dont tell THEM how to feel.
Ive been dealing with illness for 13 yrs now , and I call it being a realist.
To each his own I guess but for me it is NOT a journey by any stretch!
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Oh God as if "journey" wasn't bad enough!!!!!....."pink journey" now that makes me want to excuse me, puke. Never did like the colour pink, hate it even more now.
Purple32......sorry you are going through so much crap.....you're right, it ain't no journey,
that's for sure.0 -
I have had people tell me I'm a pessimist. I say I'm a realist. The difference? A optimist says the glass is half full. A pessimist half empty. A realist says you have a glass twice as big as you need.
I guess if you go by Webster's definition - something suggesting travel or passage from one place to another - than I suppose we are on a journey. But, I also agree with the posts above that a journey suggests it is one that you've opted to undertake, not one that makes you feel like you've just been shot out of a cannon and now you've landed on some parallel pink planet.
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Quite apt, Mini!
Thanks, scottie ...I know we are all going thru some kind of garbage .0 -
Have not been on this thread in awhile and had pages to read. Ca't remember what everyone has said but I did have a baseline PET scan done. I just had my 3 month MO visit. All was good and will get my TM's back next week. I had a recent colonoscopy and had a pre-cancer polyp so MO was not happy about that and gave me the lecture about keeping on schedule with the colonoscopies.
Those that have started chemo I hope all goes well for you0 -
Hey, Sheila, long time no write, but I popped in to say hello. I swear to God that I did not copy Sherryc and follow her over here.
Glad I came by to read the "B/C journey" posts.
re: a journey suggests it is one that you've opted to undertake, not one that makes you feel like you've just been shot out of a cannon and now you've landed on some parallel pink planet.
Mini1, that is just hilarious and too true!!!
But it is hard to refer to everything without some kind of dorky label, isn't it? I say stuff like, "that year I had my cancer." And my inner voice hollers, "Oh, aren't you optimistic that you got rid of it all?"
And Mini, I always thought the realist says, "Well, it's not gonna get filled again, so I may as well drink the rest of it!"
And I say, "What glass? I'm chugging straight from the bottle." Humor-ist.
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Eating the worm at the bottle's bottom? ....hmmm maybe that's the problem. lol
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Eli I now your stalking me, haha
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I guess I am stalking you, too. I don't post here much anymore, but try to keep read up.
I don't think about it as a journery, it reminds me more of one of those "come as you are" kidnap breakfasts. Someone comes to your house, rips you out of bed without letting you get ready and then wisks you off in a car and you don't know where you are going. (It's something we did when we were teens) I'm still waiting for the stack of pancakes with syrup without being reminded daily that I had (I am being optimistic, Eli) cancer.
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If B/C is a "journey," what the heck is lymphedema? A freakin' "souvenier?" With memorabilia like that (and similar,) please don't make us go on any more "journies!"
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I truly believe that lymphedema is in *many* ways , WORSE than BC.
There, I've said it.
It stays right on the front burner where you have to deal with it every single day. There is NO huge awareness campaign out there and I never heard anybody dare call it a " lymphedema journey". I havent seen a " walk for the cure " for LE. My Harvard trained DRs didnt even so much as hand me a pamphlet on it before or post surgery. There ARE things you can do to try to prevent it. (WHY aren't they telling us ?!)
You can damn well DIE from the effects of it and it's ugly pal, cellulitis.
I dont know if I have LE because I have had some severe edema recently and a PA in Boston termed it LE and sent me to an LE therapist. When I went , she said she did not see LE and while I pray she is right, I know she could be wrong. Time will tell. For that period of time that I was convinced the swelling was LE and my rings wouldnt fit anymore , and I posted on LE threads for answers , I saw just how devastating a condition this is. It's permanent. Theres no hope of it going away ...as there truly is of cancer.This is a LIFETIME RISK to all of us ladies, and while I am not trying to scare anybody , I ask you - PLEASE inform yourselves.
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purple32: so sorry about the LE. This is indeed a great mystery as to why no doctors pay much attention to it! You said "there ARE things you can do to try to prevent it." Can you name the key ones? How long after the surgery does LE usually start? If we are always at risk if we have had sentinel node biopsy, do they know what can trigger it? Which are the best websites you have found? I think we could really help get the word out on this and other forum threads! Thank you for your insights. But mostly I thank you for sharing and I hope you get some relief and satisfaction from informing others like you have been doing. You are not alone and together with others you can make a difference.
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My veins on my "good" side have been used so much that they are ellusive and difficult to use. When I refuse to let healthcare personnel use my "bad" side I have had some tell me it's been long enough it shouldn't be a problem. What do they think, that nodes have regrown or the remaining ones have become super-nodes? It just shows me that LE isn't a condition that is given much attention when it comes to educating healthcare workers, let alone patients!
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Stage 1 Ladies,
I've been off the boards and have caught up on your comments.
My last post was inappropriate here. My comment should have been personal - about my own experience and having survived a year and having some normalcy.
I have fears of each and every doctor appointment and test. I am dealing with post rad changes and physical and emotional SEs from A.I. It's not all good, I agree. I'm in a recovery time right now, and just darned happy to have this time. To those who were offended, I apologize for the insensitive language.
Sincerely,
Joan8110 -
Meece, you are so right. I recently had an endoscopy. As I was being prepped for the procedure, I asked that my bp cuff be placed on my right (good) arm. As I was being wheeled into the procedure room the anesthesiologist came in and asked why the cuff was on that arm then proceeded to tell me (nicely) that I should have been told that if I hadn't had a problem in the first six months then it was alright to use that arm. I really didn't know what to say, because the only person who every said anything at all to me about LE was my BS right after my surgery, and that wasn't much. He then proceeded to remove the cuff and put it on my other one. It really upset me but I had already been drugged for the procedure and I really had no I idea if he was right or not since I had received so little information about it.
Soon after I questioned my ro about it. He really went into a lot of detail about it but basically told me that I was low risk and should not be afraid to use the arm but be vigilant about injury or infection on that side. He did say that it could develop years later but again, I was low risk for it to do so.
So I don't know. All I know is that if I get a cut or mosquito bite on that side I freak out.0 -
purple32, I feel the same about LE. To me that is one real downside to making the choice of mastectomy (which still does not give you 100% chance to get it, but does up the odds.) It freaks me out that it is NOT discussed that often with women BEFORE they get mastectomies, as it darn well should be. But I'm not just singling out mastectomies, because women with no-node lumpectomies have gotten it as well. When they give us that literature packet when we get the Dx, why nothing about LE in there? Where's the brochure?
That said, it really is all in the perspective. On this thread, LE can be one of our most dreadful worries (second to the cancer returning?) Go read on a Stage IV thread and it's a lot lower on the list of worries there. Fretting over LE is actually a luxury of being an early-stager. I'm not being judgmental, I'm just sayin'.
Personally, I am three years out and feel that my lymph system has repaired some of the old and established new drainage channels. I don't have lymphedema and think my risk to get it in the future is very low. Not non-existent, just very low. I have had one blood draw on my treatment side (probably just to live dangerously) but I don't plan to make it a habit.
I DID have "surgical edema" in my chest and boob area after surgery. I went for a few PT sessions after rads, to prevent scar adhesions and the PT also did the lymph draining strokes on me then. I did the massage at home a lot during the first 6-8 mos. too. Who knows if that helped, but I don't think it would hurt if women were instructed to do the lymph drainage massage, just to help move the fluid around after surgery, as a measure of prevention of LE. I do know that if the channels and tissues get "stretched out" by full blown LE, it is much harder to reverse it than it is to prevent it from happening in the first place.
p.s. Meece, I think, with 16 nodes out like you, I would remain cautious. And, since you have no LE, you must have SUPER NODE 17 in there somewhere, or something!!!
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Where is that Ms. Sheila, anyway?
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I got a bright bright pink wristband from ... I'll have to check where, but I wear it when in surgery and it says do nort use that arm for BP or sticks. The nurses prior to my last surgery liked it and said they were going to look into getting some for the hospital. I sent a request to (whereever I got it, my chemo brain never went away) and they sent it for free.
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I wish the nurses and hospital workers could use my right side, but I insist they keep using the left, the non affected side. My veins on the left side are so shot to hell. I really regret not having a port during chemo.
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There is a lymphadema society which has a lot of educational stuff and the contact info to get the free hot pink wristband. SNB is low risk since risk goes up with the number of nodes removed, but is still 5-10% lifetime risk. I bought myself a medic alert bracelet and added lymph risk no bp needles right arm after penicillin allergy. Now I'm amusing myself making bead bracelets for it to match my wardrobe.
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Hello, all,
Just wanted to drop in to give you some websites for your lymphedema questions. Here's information on risk reduction strategies that are simple lifestyle adjustments:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htmHere's how to find a well-qualified lymphedema therapist near you. Any doctor on your team can write a referral for an evaluation and personalized risk-reduction tips:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmAnd here's the website to order your free neon-pink lymphedema alert bracelet (or two if you've had bilateral surgeries, even prophylactic):
http://www.lymphedema.com/
Click on "Free Lymphedema Alertband" on the left-hand side of the page to orderWren's idea of a medicalert bracelet is a great one--helps remind YOU not to offer that arm for blood draws or BP too!
Nance, low risk is only a guess. Recent research shows that number of nodes removed is only one part of our risk assessment. Others include excess weight, previous surgeries or trauma to the chest or axilla, and--here's the clincher
--a genetic pre-disposition. Some of the women who show up on the lymphedema board here have developed it as long as 26 years after treatment, so the bit about 6 months is inaccurate. Next time you have a procedure, you might want to get the surgeon to write into his orders that your at-risk arm is not to be used. Here's information about lymphedema written for doctors by a doctor who developed lymphedema:
http://www.stepup-speakout.org/essential informat for healthcare providers.htm
You can copy it off and pass it along to all your treating doctors, or use it to support your insistence on leaving that arm alone.Being informed about lymphedema should give you some peace of mind. More than half of us will never have to deal with it, but knowing what steps can be taken to lower your risk is just smart. Also, please know that if you do notice any signs of early lymphedema (arm achiness or heaviness, visible swelling, or tighter fit of jewelry and clothes), prompt treatment keeps the swelling in good control and makes that control much easier going forward.
Hope some of that helps. Be well! And may none of you join our Swell Sorority!
Binney0 -
Binney, thank you for the great information.
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I had a lumpectomy and have "mild" LE in my upper arm. It's appx. a centimeter larger than my other arm. I have started lifting light weights (5lbs) and do planks, but it hasn't affected me negatively so far. At night I put my wedding ring on my right finger so I can tell if they are swelling. So far, so good. Good thing. I need weights for my osteoporosis so I'm glad about that. Also, I wear a sleeve when I exercise with weights, fly, etc. I don't lift heavy things and try to be careful, but I don't think about much. You can only worry about so much without losing yourself. BC is enough for me.
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elimar
With all due respect , that line does sound judgmental, and I know many a women who actually HAVE LE who would not comapre it to another cancer stage. This is not a contest.
BTW, having LE does not preclude anyone from getting stage 4 cancer ....or cellulitis ...or dying.
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Good attitude, Mini. Good for you!
Hopefully, your BC will NEVER return ( fingers crossed )
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Fearlessfoot
I'm sorry I didnt see your post. Prevention is key! Some may get it ' no matter what " , but like everything else in BC, we all want to do what we can NOT to get worse soooooo, know this...........
LE is a *lifetime* risk, but I have read it is more common in the first yr or 2 post surgery ( not sure) A lady from the BC forum PM' d me the other day. After 20 yrs she now has it - from an airplane flight.(moral of the story? Wear a compression sleeve during flights)
Good questions! NEVER get a BP taken in the affected arm.....despite what any med official tells you. It's YOUR arm.
Same goes for pin pricks, glucose tests, bloodwork- this is a NEVER thing!
Keep arms and hands extra clean. Use electric razor and do not geta CUT! IF you get a cut anywhere oimn the affected side , wash, put antibiotic ointment on it and iof needed , see a dr. Keep a GOOD EYE on that area. If it turmns hot, rashy or otherwises seems strange, call DR at once ... ( watch out for cellulitis)
DO NOT get a massage.DO NOT go in to a hot tub.
Consider being fitted for a special sleeve before airplane travel or repetive movments ( like raking) or lifting weights.
Watch for and report any unusual swelling on the affected side.
Those are some of the pro active things you can do to help yourself.
DRS SHOULD TELL US ALL THIS!
Take 20 mins. out of your day and visit the LE theread on this forum ( Its not contagious :>) You will get some of the very best and most accurate info there .Good Luck to ALL of us !
I hope this helps someone.Pls feel free to cut/paste and spread it on other threads.
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Mini1
If you do have LE and are doing those things I sincerely hope you have a fitted compression sleeve. I am not trying to worry you, just a caution and necessary measure with LE . You could go for 1 visit to an LE therapist and get an RX to be fitted.
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Hi Stage 1 Sisters!
I have a question for everyone. I just had a bilateral.1.6 cm IDC. Stage 1a er+ pr+. HER 2 neu.
My Oncontype score just came back at 17. Dr. Says 11% chance of recurrence in 10 yrs. If I took Chemo, it would drop it to 7%. Small, small, benefit.
If any of you have any numbers similar, would you please let me know what you and your doctor decided on chemo?
Thanks so much!0 -
My onco type was 19 and my MO said there would be no benefit to me having chemo...
However, I am 65 so not sure if age is a factor. I am stage 1 grade 2 like you and my tumour was 2.3 cm clear nodes. Hard decision but I know you will get lots of responses here from the wonderful gals.0
