TRIPLE POSITIVE GROUP
Comments
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fluff, odds are it is something other than mets. There are lots of other possibilities. How long has it been bothering you? Should you have that many PET scans? I hear all that radioactive stuff isn't good for you.
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I'm meeting with a woman today for lunch that just had a double MX with no reconstruction. She sounds a little down. (This is her second go round with BC) Any advice ladies on how I might encourage her?
Thanks in advance!
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TonLee let her talk first. Then you can talk. She may need a hug, even if you aren't a touchy feely person you can do that… but you know the basics:
- Do not tell her how to feel (ex. Be strong and move on)
- Don't say you know how she feels unless you really can related to the same issue even then be cautious. It might be different for her.
- Don't tell her everything will be OK
and here are a bunch more that may or may not apply from the ACS. But being a survivor yourself you have a good idea already.
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thanks guys...i actually kinda dumped on the poster who posted that because i felt it scared a lot of people needlessly, she did post some studies to back it up afterwards, i didnt bother to read them but the other ladies did and they didn't sound very reliable. The girl who started the thread seemed so scared to start off with and then that gets posted as a reply...
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I remember having a gang of alternative mean gals beat up on me while I was going through chemo. They kept saying "chemo kills and will make your cancer grow, The white coats and Pharma companies just want to keep you sick so they can make money" BS. I swear their goal is to get people to stop doing traditional proven treatment.
Then they started insulting me by posting that English must not be my first language since I can't seem to understand what they are saying. Eventually I had to leave the thread because other women were getting so upset that they were beating up on me. Nice to have the support but I don't want people going through treatment to bet upset.
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Good morning to all of you wonderful ladies!
LeeA, I agree fully with your reminder about staying positive, mentally, as the mind-body connection is powerful. I went for a long walk last night (cold outside!!), and I feel much calmer about the whole Tamoxifen thing. As we all know, it is a process, and accepting various facts relating to our treatment plans takes time. Thanks for your prayers, TonLee. As a woman of great faith, I appreciate them greatly. Cypher and fluffqueen01, thanks for sharing with me how you are doing on Tamoxifen. It's only 5 days for you, cypher, but it's nice to read that you are not struggling too much. Fluffqueen01, your hot flashes and occasional joint issues are, honestly, what I expect, but as LeeA has written, one must believe in the treatment plan and be positive about it, or maybe negative thoughts/great anxiety will reduce the effectiveness of the drug/procedure. TonLee, sending you an abundance of prayers and support as you meet with the lady today who has had a double mx and is going through the BC journey for a second time. You are a smart woman and a very good listener, I believe, so as you listen, you will be able to respond appropriately. Off to do housework, ladies. Who would have ever thought being able to do housework would excite me and make me feel blessed!!
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Gratitude - I started Tamoxifen almost three weeks ago and I felt like you, I put it off for two weeks with various excuses. I can't say I've been side effect free but it hasn't been as bad as I thought. I've played with the best time to take it and have found bedtime to e the best time for me as I feel tired and nauseated after I take it, I can sleep through that. I am having more hot flashes but breathing through them/riding them out like I remember doing for labor contractions.
Rozem - re: the study, both groups had surgery, only one group had radiation; maybe the addition of rads helped improve outcome. Who knows? It will be interesting to see how treatment evolves in the future. As others have said, many of us didn't have a choice re: mastectomy, we just do the best with the information we have at the time and the situation we find ourselves in, it's all we can do0 -
Rozem also remember that not everyone got the same quality treatment! Some surgeons are better than others. African American women, although get breast cancer less often then Caucasian women in the US, have a higher mortality rate. Do you think it's because of their race? I don't. I think in many cases it can be one or a combination of being diagnosed too late, more aggressive cancer, and poor quality care.
If you have confidence in your team then I wouldn't worry about it. I know I'm not and I was in a gray area for rads and got a pass. Still NED.
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question for my cousin who is having a freak attack today....the did a mammo a few wks ago, got a call back for a second view on the left breast, said it was fine and sent her home. Gets a call a wk later to do a u/s because the tech told her that the mammo showed a "shadow" that wasnt there last yr. u/s still inconclusive. they are now sending her for a mri. What could a "shadow" be on a mammo that does not show on the us? calcifications?
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Lago, regarding African American women's poorer breast cancer survival, I read an article recently (can't remember where, but I think in one of the cancer-related magazines in my RO's office) that said African American women are much more likely to have triple negative BC, which is a factor in their poorer survival statistics.
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I just stopped back by to catch up and see what was going on with this thread and the first thing I read was in TonLee's post about something than can make vaginas purple!!! My heart stopped for a second, now what?!?!? I cracked up, too funny!!! TonLee, I am sure the woman you are with is in great company for lunch today!!
Lago, sorry about the Alternative thread. I did all of the conventional route, but I supplemented and believe firmly in many alternative therapies as a means of support. And this means just lots of basic common sense stuff too...fresh air, sunshine, lots of rest, minimize stress, exercise, and a clean diet. I too have been attacked on those threads, by people who are not alternative in the least. I guess they have nothing better to do. I just stay away when I see certain names active on those threads.0 -
Roz..it could be microcalcs, tissue thickening due to hormones or even just an imaging situation. I have had this happen recently and it turned out to be just the way I had positioned in the initial images. Hope it works out for her!!
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PatinMN Yes that's why I put "more aggressive cancer" on the list but the other reasons also stand up.
geewhiz I'm all for complimentary, that's why I was on the thread to begin with but most of the alternative don't want people like me who support complimentary and trust her MDs. The ones I ran into were pretty black and white and kept putting down proven conventional treatment… and they were so mean that some were banned for a bit. Many of their posts were removed either by the community or the mods. There is no excuse for that behavior.
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Hi Everyone. I am new to the site and also +++ positive. I have enjoy reading all the comments and experiences everyone is going through. It is nice to know I am not alone. I have two more treatments of the TCH and will finish Herceptin in mid-late Novberm. I am also schedule for a bi-lateral mastectomy in April. I am planning on having a new procedure called "Immediate single stage implant reconstruction where the mastectomy and implants are done in one surgery. Does anyone know anything about this procedure? It is offered at Duke Medical University
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Toughgirls,
I could of had that procedure but my bs said I wouldn't like her very much afterwards but everyone's experiences are different I know someone will chime in I think some of the lady's here might of had the same0 -
GeeW,
haha...glad it made you smile.
Lago,
I REMEMBER the mean girls thing. I think you might have had a cyber stalker or two. It seemed like there was a group of women who searched you out just to ridicule you....you handled it well if I remember correctly. You pointed everyone's attention to the fact they were ganging up on you, being rude. Then moved on.
Glad that all resolved. I think you're a pretty special lady.
So I had lunch with my friend. You know I hate BC, but honestly it has brought some of the most amazing women into my life. Women I would not have otherwise encountered.
It is both humbling and a gift.
I used to mentally roll my eyes when people said things to me like "you're so strong" and "you're handling this so well." I figured WHAT CHOICE DO I HAVE? Shesh.
But you know what? When I encounter women, like I did today, who choose not only to push forward, but do it with GRACE (not the fake kind! lol) and without self pity...with dare I say, contentment....it makes me want to say those exact same things to her.
It's easy to get lost in the breast cancer experience. I met some women who seemed to have PTSD from BC diagnosis and tx and just couldn't get over it. It was all they ever talked about, even though they were 3-4-5 years out.
So when I started I said to myself, "tonya, you will NOT become a pink lady! This will NOT rule your life, however much of it you have left! You will not be one of those women who can't talk about anything else! NO ONE CARES!"
Well, I was right, and I was totally wrong. Probably fear, a little denial, who knows, made me so certain.
Breast cancer isn't my life. I have rejoined life as I knew it. But BC is a PART of my life.
What kind of self-centered piece of work would I be to take all my BC experience, all my real life knowledge, and hoard it?
There are real lives on the line. And you know what? having mostly avoided the female demographic most of my adult life, I am discovering I LIKE helping other women. Sure, it's not exactly how I envisioned my contribution to making the world a better place....but it is what it is.
I see now that coming along side someone is as much a blessing as giving one. And why should any woman with breast cancer be alone? There are SO MANY OF US!
While I don't plan on making BC related business a large part of my life. I do, from here forward, plan to make myself available to anyone that needs help with it, anyone God brings into my life.
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My CT scan came back clean!!! The 7mm spot on my lung and 1cm spot on my liver first noted 3 months ago on initial scan are still there (meaning they're not responding to chemo and therefore not cancer). Lung spot is probably a scar from previous illness, liver spot is probably hemangioma. As long as it's not mets I am one happy camper!!
Tonlee, I love your post and agree with all of it.
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Steiner,
That is FANTASTIC news!! Congrats!! WOO HOO!!!
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TonLee You are not a pink lady. We do not talk about breast cancer all the time. We are here to help others with their journey.
Tonlee I feel like we've know each other forever because we traveled this journey about the same time. We don't always agree but yet we are alike in many ways… and the mutual respect we have for each other just grows. I wish those mean gals (yes they stalked me from thread to thread for a while) could learn something from us and our relationship.
Didn't mean for that to get so mushy.
BTW if you need a laugh check out my post (that only got one response). It's pretty funny: linky
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steiner18 - great news! :-)
Hi everyone, have not been on much as we have had a week away at the beach (summer here). It was so nice to go to sleep and wake to the sound of waves each day. We had all 3 of our kids with us (21, 19, 17) and an extra, our son's girlfriend. We went and played mini-golf and even went to the circus that was in town.
This was our first holiday in nearly 3 years! We didn't end up going anywhere last year because I was working full-time between chemo and surgery appointments. I still have just ONE more herceptin in a week and I can't wait for it to be done and over. These past few have really knocked me around physically (body aches, headaches, mild nausea) and emotionally (from about 5 days after the infusion - sadness, grumpiness).
I had a whole body bone scan and CT scan 3 weeks ago that were both clear except I seem to have developed, over the past year of treatment, a whole bunch of "arthritic changes" at the age of 47yrs. Between the arthritic changes, the Herceptin aches and the Tamoxifen aches my back has been hurting so much that I went to my PCP yesterday. He's given me Mobic to take (15mg every 2nd day, 2 weeks on then two weeks off).
Has anyone else been taking this and had it work?
Jenn0 -
lago - I for one am hugely appreciative of yours and TonLee's presence here :-)
Jenn0 -
If it weren't for TonLee this thread woudldn't even exist!
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Lago and Tonlee, I agree with Jennt28. I'm so glad to have found these forums. And for the women (like you both) who have gone before me to stay around and share information and experiences is immensely helpful! And I appreciate it. I'm an educator at heart, my career is in public health (prevent, promote, protect), and I have found great satisfaction in trying to help those I know diagnosed after me in navigating their way through treatment. I've referred most of them to this site to get more info, and just sharing experiences with each other is so nice because it helps us know we're not alone!
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jenn - what is mobic?
great post tonlee -
and lago i remember those aswell and you handled it with grace and intelligence as you always do!
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Hope everyone has had a pleasant/decent day today!
ToughGirls, welcome to this thread. While it is sad that any of us is here as the reason is BC, you will connect with some pretty amazing women and learn a great deal and extend your support/knowledge to others. Again, welcome, and best of luck as you move through your treatment regimen.
Steiner18, you must be so relieved that your CT scan results indicate the liver and lung spots in no way are connected with cancer. YAHOOOOOO!
TonLee, glad your lunch was pleasant and that the woman impressed you with her genuine courage, strength and level of acceptance. I am certain you impressed her in the same way. What you have written is poignant and truthful. Thanks for taking the time to express what you experienced with us.
Lago, all your posts are well-written, they are informative and shame on other female cancer patients who would torment/disrespect you in any way. I would ask those bullies, "What is so broken inside you that you derive pleasure from trying to hurt/destroy/degrade another human being. Your actions reveal you need help, not your victim." I always look forward to reading what you write.
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Lago, I know I don't talk about BC all the time...but I feared I might become one of those women. You know, the never-moves-on....unless I'm with a BC group member, or here, I try not to talk about it at all.
This took a learning curve for me. When someone asks how I'm doing, 99.9% of the time, they just want to hear "fine." Lol That took me a little while to learn because I tend to be a) literal and b) honest.
Also, I didn't think that was mushy..lol. And really it is BCO that made this article possible, not me. But I am glad we triple positive ladies have our own place.
And it is the best thread on this site. Right?
What?!?
lol
Thanks Gratitude and everyone here. I never really thought about leaving BCO because by the time I was done with tx, I'd made some real connections with people.
So, now BCO is stuck with me.
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One more quick thing. Is there anyone here that had a double MX without reconstruction right away that will answer a couple questions for me? If your game, give me a shout out and I will shoot them your way
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Ok, got them answered! Thanks!!
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Steiner....woot! Woot! Congrats
Cypher...I only had one pet scan after I badgered him into and had to promise I wouldn't ask again for two years (I crossed my fingers behinds back on that one).
With that being said however, I can't wait to tell him that it is a good thing I had that scan. The ortho doc did a couple of X-rays and said he thinks I have some cervical arthritis. Showed me the spot. He said if I hadn't had the clean pet scan six months ago, he would be more concerned that it might be mets and order the MRI automatically. I am doing a steroid pack for a week, and physical twice a week or a month to see if it gets better.
Jennt....we can be arthritic together, lol.
I appreciate this site so much. It is the one place where I can worry about BC and its residual gifts,and then I can walk away and move onto to real life for awhile. So...a huge thank you for starting the thread and everyone's support.
Crazy day here, one BIL goes to hospital for a minor prostrate procedure, has bleeding issues and is now getting platelets trying to get the bleeding to totally stop. (He forgot to quit taking his baby aspirin early.) other BIL was admitted yesterday with minor chest pains and had a stent put in today......on the complete other side of town.0 -
steiner - yay!
jennt - yay on the holiday, don't know wht Mobic is but I hope it works!
tonlee - yes, this is the best thread - home for many of us! You and lago held my hand - inspiring me to continue to do the same for the ladies coming up behind all of us!
fluff - man, when it rains it pours!
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