TRIPLE POSITIVE GROUP
Comments
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Goutlaw--I'm so sorry u ended up here, but u have found a wonderful site for all u'r questions and concerns. All of these women (not me) know so much and will care for u so well u will find comfort here. Going thru this with 5 young young children u are already a supermom and if anyone offers u help take it don't be to proud and most families and friends mean well so do what u can and depend on people too. Please don't google things, just come on board here and ask u'r questions already u got answers that are more up than u probably expected. And if u trust and like u'r team put it in their hands and they will take care of u and report any different feelings u have. They try so hard to make us comfortable so just tell them and I hope u come back for more support and care.
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I'm glad to hear it's more than 50/50, it kind of irritates me that my onc dances around those questions, because then I end up trying to do the research myself and coming up with lower more depressing odds. They took 2 nodes from me, both were essentially all cancer so I can only assume that more were involved. They won't take any more out to check.
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BethCon1 you don't want them to take out more. It increases your chance of (LE) Lymphedema. The studies that came out a few years ago found that they don't have to remove all the nodes but just treat with radiation instead. If I were treated today they wouldn't have only done a SNB (sentinel node biopsy) on me rather than take 10 nodes on the left. That was standard care at the time. Ended up I had no node involvement but I do have LE. I wear my sleeve everyday.
You are still at risk of getting LE even with 2 nodes and especially if you do radiation but it's less than removing all those nodes… and since it doesn't make a difference as far as the cancer spreading why remove more!
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Had a Great time at the survivor lap relay for life.This is My daughter and I today things are trying to get better time will tell but this is a start.
Hope everyone is having a nice weekend.
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Bethcon,
My mo's... I had 2 because I switched mid treatment... Didn't want to do the stats either. You're going to meet so many breast cancer survivors that it'll make your head spin . Somedays it seems like everyone had it! we're all different. Some with small tumors, no nodes will recur or get mets . Right now focus on getting through your active treatments. Eat well, get rest drink your fluids and ask others for help.0 -
Ashla, I'm starting to see that. There are way more women out there that have gone through this than I realized. I guess because I didn't really reach out to groups like this at first. Also, I know having more lymph nodes out won't help, but I get so nervous that treatment didn't work. I had surgery before chemo so there was no seeing how it was working. I had clear margins after the mastectomy but it was also in my lymph nodes. I guess I just wish they could give me a definite all clear. I just want to be able to watch my kids grow up!
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Bethcon1
I don 't believe any of us will ever get an all clear. No one who has had cancer likely ever does. The best we can do is think less about it with the passage of time. The women who are further out tell me it gets better.
Just so you know... so many of us here including me had complete pathological responses to chemo. Our tumors disappeared completely! Others had partial responses. That 's why we have layers of treatments . Still no guarantees for any of us though.
So grateful to the girls who started this forum and who continue to guide us along!0 -
Bethcon,
http://www.walesonline.co.uk/news/health/breast-cancer-welsh-non-surgery-treatment-4405930
Another study confiming recent research... "
Thousands of patients whose breast cancer has spread beyond the initial tumour could avoid having to undergo further invasive surgery following a major trial involvingWelshmedics.
A team based at the breast centre at the University Hospital Llandough have lead the UK arm of a European cancer trial which found that less invasive treatment can be as effective as surgery for some breast cancer patients.
The findings mean that radiotherapy could be used instead of surgical treatment to remove cancer cells that have developed in an armpit’s lymph nodes.
Up to now, when it has been discovered the disease has spread to the lymph nodes, the only option has been to remove them through surgery."
.www.walesonline.co.uk/news/hea...0 -
Bethcon1 They hit you with Adriamycin. I don't think you can get stronger stuff than that. Also you are still doing Tamoxifen, and probably will be on that for 10 years. So you are still doing treatment to fight any strays. The odds are in your favor. Don't worry about something that my never happen…
But it took most of us a while to get to that point. Trust me the further you get out from treatment the more you feel that you're going to make it. I think with breat cancer, if you pass the 25 year mark they might consider you cured. BTW there is a woman in my building that is an over 30 year survivor. She has LE but other than that she looks good and is very happy.
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Bethcon - my heart goes out to you, Goutlaw and every new woman who joins our not-so-little group. I went crazy researching at first (OK, I still doa bit...). In hindsight, I think I really just wanted to find proof that I was going to be okay. You may think you want numbers, but in reality you want reassurance that you are going to be here to watch your kids grow up. Statistics no longer matter, because frankly we got the damn disease and now most of us here are cancer-free. Remind yourself that you have done everything you possible could - there is nothing stronger to toss at the beast! I'm only a few months ahead of you, and I don't know exactly when the turning point for me was, but one day I just woke up and decided in my head that I was cured. I had surgery, chemo, radiation...I'm taking Tamoxifen and getting Herceptin. I have won the battle. I am living my life. Something is going to get me one of these days, as we are all going to leave this earth some day. I will worry about that when that day comes.
Surround yourself with people who get you. Eliminate those who drag you down. Stay informed. Understand your treatment options but don't get too far ahead of yourself. It really is true that worrying is not helpful!
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I'm waiting for that turning point. Right now I still hate the word survivor...i don't feel like one. I still feel like a cancer patient. I'm hoping to wake up one day and have it click.
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BethCon1 I handle the whole journey pretty well (except the freak out we all have at the very beginning). I think it took at least 2 years for me to start to feel more like me. Now I'm about 3 years from diagnosis (the day you become a survivor) and I don't think about "my cancer" much. These days is more about sharing and letting people going through it that they can do this. Seems most of us early stagers who get treated make it.
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Bethcon I think some of us know wht u mean---My sister and I never use the word survivor--even tho it's a wonderful explanation--we use words like well I got thru this, and I made it and Oh anotherDr. I hve to see---I lways think of a survivor as someone whose airplane crashes and they live off the land and finally they are found--all we do is show up at some Drs. office and take meds, chemo, rads, and other solutions to get rid of what they can, and I admire all the women who make this into a positive when things have settled down. There is no book on how long this takes mentally so the timeline is so different for all and it just doesn't stop so fast. So give it all the time u need u'll know in u'r heart and head when u start to feel like u've made it. All I'm really saying is it hasn't been that long and u'r on tomoxaphin (sp) u'r still a patient.
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Pbrain, I have my pcp order his tests, ask him if they can wait till my next lab appt at the cancer center. He.has no problem with that. If he wants it right away, I make them try without a tourniquet. If they can't get it I go go by the cancer center lab on my way home and have them draw from my port. The only time I need it in my hand is for the MUGA. Cause they don't use the port for nuclear material.
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Moon, now that is odd because the only time anyone had used my port outside of the cancer center was for the MUGA...tee hee...
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Pbrain,
Bet you didn't need much blush for the next few days! Got your own glow on!0 -
LOL, that is weird! LOL.
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Pbrain, I was wondering the same thing about the port. I can’t wait to get mine out – though I’m not sure what MO’s thoughts are on it b/c we haven’t talked about it yet. I have the stupid power port, so it’s HUGE. They never use it for anything but the chemo/herceptin though, so it’s totally unnecessary to have such a big thing protruding out of my collarbone.
SpecialK, what are all those tests you have? I get the CBC and Vit D but am not sure about the other ones.
ashla, thanks for the interesting links!
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Cypher I think if u talk to u'r Dr. they pretty much take it out when u really want it out. And as long as u ave one good arm I imagine it would be fine. So just talk to u'r Onc.
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thanks Cami. I don't really underrstand the pros and cons so I do want to hear what he has to say on the subject. In the meantime, now that I am rounding the finishing line with the cancer treatments, my stupid knee is messed up. Even though I am now a huge cancer-induced hypochondriac, I gotta say I am having a hard time thinking this is knee mets! I think I dislocated it or something. Well anyway, at least it's not cancer! Presumably. (Sheesh!)
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I wish I had a power port at the time. Mine stuck out a lot but it was a juvenile one. I'm tiny. I hear the new ones are not as big.
I didn't care though. In the summer I just let is show. No one ever asked me about it. I used to get asked about my LE sleeve all the time. Not so much anymore… but summer just started so we'll see.
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Ok, this is the only place where I can really let my neuroses out and not get ridiculed. I slept very fitfully last night (which I tend to do on Sundays) and at one point I swear I had a small seizure. Now I'm convinced that I have a brain full of cancer. I know, I'm nuts! I've worked myself into such a froth. Of course I also think I have rectal cancer because of my hemerhoids. I'm a mess.
Talk me off the ledge!!
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Pbrain,
Step away from the ledge. I sleep fitfully every night. Think i nsomnia is one of the most common SEs of this process for both physical and psychological reasons. You're really lucky in that regard. The likelihood of mets to the brain when you just finished treatment for early stage low grade cancer is probably statistically slim. If you still feel this way in a week or so...call your mo. Don't let it brew in yourpsyche.
You had all kinds of serious digestive problems during your agressive chemo ...that's why you have hemorrhoids. Not like they showed up out of the blue. Seriously...if you're worried talk to your mo! XO0 -
PBrain--Ashla is right---I think when things are done alot of people think every lump, headache, twitch has something to do with cancer. U have to remember u body and mind have been thru so so much there's still an aftershock of sorts. And u'r Dr knows this so call and try to put u'r mind at ease.
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cypher - here are all my tests - you said CBC and Vit D. you get, I also get a CA 27/29 which is a tumor marker test, a CEA which is carcinoembryonic antigen testing - another tumor marker which measures a protein in the blood, and a CMP is a comprehensive metabolic panel, which is not specifically a cancer test, we should all have one periodically, it shows these things: sodium, potassium, calcium, chloride, carbon dioxide, glucose, blood urea nitrogen (BUN), creatinine, total protein, albumin, total bilirubin, alkaline phosphatase (ALP), aspartate aminotransferase (AST), and alanine aminotransferase (ALT). Off numbers in any of those things can signal a problem with major organs and body processes, so he does a CMP every time I see him.
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Pbrain, I've had that happen to me before, way before I ever had cancer. Every once in awhile I experience sleep paralysis too. I think its just stress. About 4 years ago we were moving from Oregon back to Pennsylvania and I was so stressed out. The one night I woke up because I thought there had been a small earthquake. I researched the news and asked around and there was nothing, after awhile I realized it was me. I had been shaking so much in my sleep that it woke me up. It's a strange, scary feeling, but it doesn't have anything to do with cancer. I hope that makes you feel a little better.
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BethCon, that definitely does. You guys are such great help. I just woke up last night thinking "what the heck was that?" then I fell back asleep. But I was moving around like jumping bean so I wasn't sure what it was.
I'm so glad to have this board so I can come wailing here when I'm freaked!
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PBrain,
You are not the first to think Cancer when something hurt or is not feeling right ..I have turned into an even bigger worry wort than I was and the anxiety has increased so I can understand...0 -
Pbrain, Wow- don't do this to yourself. You will drive yourself crazy. Remember if you did not have breast cancer many of these things would happen anyway and you would not give them a second thought. Be good to yourself,don't let fear take over.
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Pbrain, you may not know it, but your humor just cracks me up. Not sleeping well is just part of what has happened to us, and it is natural to wonder when we get a new problem, is it cancer that has returned?
Thanks to all of you who share your insight, knowledge, humor, fears. We all benefit.
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