If you are not Stage IV but have questions, you may post here
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Trying-to-Understand~ Please respect these ladies wishes. I think they have shared enough information with you to determine that it is time to move on. They have also been thoughtful enough to provide you with another source of support on the caregiver forum(s). Here is a direct link to take you there: http://community.breastcancer.org/forum/144
I have no place on this forum. Nor do you.., Wayne please leave these ladies alone. And please DO NOT respond to me on this forum either. I come here to learn and desire to remain in a position where that is allowed. Again.., here is a link to a forum that may be better suited to your needs: http://community.breastcancer.org/forum/144
Sincerely, C-squared
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I rarely post here, but read every day. My mom is stage IV and I've gained a wealth of knowledge on this site and have the utmost respect for all the women here.
Wayne, did you really come here to "try to understand"? It seems that you are intent upon stating and restating your opinion on chemo, including the "slash & burn" expression, which I've heard before from others opposed to "conventional" treatments. The fact is, those treatments are the best option available today, whether the intent is to cure, extend life or relieve symptoms. I don't think we have a right to judge who should or should not choose to take chemo or anything else. The women on this forum are well aware of "the realities"- we could benefit ourselves and our loved ones by reading here and educating ourselves, not coming here to lecture. And I'm horrified by the flippant way you talk about this- "itching to travel down the yellow brick road"?! This is about people trying to stay alive, not some game! What if your wife has progression and wants to do chemo again? It should be her decision- I hope that she is able to weigh her options and do what is right for her in the future.
I'm sorry if I've been too outspoken. I really value this forum and would never want to offend any of you ladies here!
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Hi Jenn and welcome to BCO. Congratulations on the birth of your healthy baby, what a joy! I know right now you are terrified of what they might find in your liver but be reassured, that your onc is right........cysts, and its more likely a cyst being fluid filled, are quite a common occurrence. The chemo you are on, if it is anything other than a cyst, will shrink it as it has done to that node.
Take a deep breath and try to relax a little.......wait to see what the CT says, you may be worrying unnecessarily.
Love n hugs. Chrissy0 -
Jenn230 - Congratulations on the birth of your baby girl. What a blessing. You have certainly had more than enough to deal with lately. I sure hope that your oncs lack of concern turns out to be right on the money and that the spot is a cyst as he believes. I am sure the CT is to just confirm his thoughts.
Try not to spend too much time worrying (harder said then done, I know). Keep yourself busy with that beautiful baby girl, go out for a walk, etc. Hang in there and come back to let us know how you make out.
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Yes, "trying to understand" may be the wrong handle here. I started out in that mode then quickly learned that slash 'n burn is acceptable. hopefully, there is a least one reader who will ask her oncologist the right, and very direct question.
Yes, I am trying - doing a poor job - to have patients - MBC - reconsider stopping their slash 'n burn - chemo prgrams. Since there is zero chemo out there, all targeted, that will kill the tumors, why devasate your bodies and minds? Hopes that one will work? Clinically, none will. Oncologists worth their salt will tell you that until the related stem cell is destroyed, targeting chemos do nothing. I am not against chemo as such, but for MBC patients, yes, you are destroying what there is left.
Your call, so to speak.
To DarkestB4da, you are not too outspoken. You clearly expressed the thoughts of many.
Wayne
in foggy & chilly Sarasota
the snow birds must be packing up - has been a miserable and expensive bad weather time for many0 -
wayne,
you are wrong that chemo doesn't kill tumors.
I was diagnosed almost 3 years ago with a large, 11 cm liver tumor. If I would not have done chemo, I would have had at the most, 6 months, as my cancer was agressive and it was already affecting my liver functions.
I did chemo for 6 months, and while it was difficult, I continued to function pretty normally through it. The liver tumor is gone and I have now been in remission for 2 years.
I am 45 and have 3 kids, 15 ,13 and 10. Because of chemo, I have had 3 years of birthdays, christmases, easters, vacations. I have seen my oldest start high school and my youngest will start middle school next year.
Tell my kids that chemo is a waste of time and never works.
I know that the cancer may come back, but I also know that 3-6 % of mbc patients have normal life spans after going into remission. I hope I am one of them, but even if I am not, I have had 3 wonderful years with my kids that I would have never had if it wasn't for chemo.
I am not "one in a million", there are other women on this site with similar situations. there are some that have been in remission for 8 years, five years, etc who all benefitted from chemo.
Laurie
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Re: Wayne
Ladies - I would stop feeding the troll.
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Wayne, I will pray for you.
Can we all just block the hijacker. This is our thread that is important to some of us for learning. These thoughts are becoming poison to some of us and we need to be built up not tore down.
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Mel you can use the ignore button which will effectively block any posts he may make so you won't need to read them any longer.
Love n hugs. Chrissy0 -
Where is the ignore button? I enjoy reading the post on this site, but Wayne has not made this a pleasant experience this am. Sometimes people need to keep their negative comments and feelings to themselves. Wayne has a right to his opinion and we have a right to ours. I come on these boards to get encouragement, advise, and support from people who are going through similar circumstances. So if It is not a help to me I choose to use the Ignore button. God Bless you Wayne and your wife. I am so thankful that my husband is not like you, cuz if he was his aSs would be gone!!! IJS
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Where is the ignore button? I enjoy reading the post on this site, but Wayne has not made this a pleasant experience this am. Sometimes people need to keep their negative comments and feelings to themselves. Wayne has a right to his opinion and we have a right to ours. I come on these boards to get encouragement, advise, and support from people who are going through similar circumstances. So if It is not a help to me I choose to use the Ignore button. God Bless you Wayne and your wife. I am so thankful that my husband is not like you, cuz if he was his aSs would be gone!!! IJS
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Macy, all you need to do is click on his avatar or name and his page will open. Across the top you will see send user a PM, add user as friend and block user. Just click on the block user and his posts will no longer be visible to you.
Love n hugs. Chrissy0 -
Chrissy, thanks for the reminder - I blocked him and now don't see any of his posts, although I CAN see that he DID post, and can unblock him if I decide I want to read anything more. What a great feature!!!
Jenn, also sending congrats on that new baby! Focus on HER for now, BREATHE and wait for scan results. I know, I know ... easier said than done. You have certainly had a rough path, and I know that feeling of just wanting a little bit of good news for a change ... sending you gentle hugs and wishes for some peaceful moments with your baby.
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THANKS CHRISSY!!!
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Reading Wayne's repetitive and provocative posts is getting very tiresome.
Wayne, please stop harassing people.
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Very sorry Ms. Laurie.
Referring "only" to MBC, you are wrong.
Read the literature. Go to MBCN.org, a site dedicated to MBC, not that the MBCN is the only resource, ask your oncologist. Deep in MBCN's on-line literature, it is wriyyen that "... there is no cure for MBC." IF she/he can point to a document that says to the contrary, all oncl will be torn.
Yes, please block my posts, hiding your head in the sand. Yes, no reason why you will not lead a long life; hoever, there is no cure. period.
Clearly or not I have made a point. It is your call, those who are disturbed by honesty.
Michelle, bypass, ignore as you wish. This is a chat group. If you do not like a post, simply move on.
I invite any of you out there who can point to the contrart, I will read.
I spoke with a nurse in the trade this morning. The BIg plus in undergoing chemo is hope. period.
before you all block, and I invite you to do so as one poster did, if you wish the truth, hope notwithstanding, do your own research.
Hope is beautiful ... with a young family, that is particularly important.
Who knows what miracules God holds for us.
I do believe in God and what he has in store for each of us.
Suzanne was diagnosed withe Stage IV back in the fall of 1995. Bad doctoring - IMHO - found tumors in Suzanne's ribs, on her lung and liver. Since Sept '12, when a 2cm was found on her liver, it grew to 6cm by Feb '13.
So block my posts. For those who do, hiding your head and mind in the sand is not going to represent good judgement. BTW, is blocking what you did in high school?
Macyhen111, thank you for your courtesy those comments about your husband need a bit of tweaking. Unlike some here, you have an open mind, well marginally open.
Closing, the key word is Hope.
Best Wishes to those who read, possibly consider ways to take care of their self including their minds.
Wayne0 -
BTW, ms Lauria (spelling wrong, my apologies.
I have said that there is no cure for MBC. I have not referred to destruction of tumors along the way. Killing a tumor is not curing the hell of MBC.
Wayne0 -
Ok, I'm back with a few more questions. I thought of asking on the regular surgical threads, but because my 32 yr old DD was IBC Stage IV at diagnosis, that colors some of our questions.
ETA: Thanks Chrissy B, for the info on blocking posts. Wayne apparently will not stop trying to force his view on you guys, and leave you in peace. I reported his last post as I fell it was hateful after you all explained so eloquently why you disagree with his views. I feel he is not asking for information on his wife's behalf, he is looking to validate his 'just give up already' point of view (conveniently from the sidelines no less).
We met with the plastic surgeon today, and she talked Tami through her choices, but the overriding message is that the best decision in her case would be to NOT do immediate reconstruction, or even have tissue expanders in yet. Just do the total mastectomy, wait to heal, and then as long as she is still 'stable', look to the reconstruction. She talked about being able to use the same scar, put in a small tissue expander in a minimal surgery, no drains, etc. Then expand for a month or two. Then go in again though the scar and place the implant. DD wants to end up with small 'b's, as she has lived her whole life with huge, unwieldy boobs on a very small frame.
The big concern is leaving too much skin behind, as some of it on the left is still showing some IBC symptoms, i.e. pitted skin, inflammation. After a lot of discussion, DD is comfortable with that decision but is still adamant (with my agreement) that she wants a BMX even with no evidence of cancer on the right side.
She has treated her cancer very aggressively since diagnosis in August, and it has worked very well for her so far. Here is my question. Because of being stage IV already, we don't see the value of having any lymph nodes removed. Why heighten the risk of lymphedema if we already know it has escaped from the breast, and it will not change her treatment plan either way? The one inflamed node in her armpit has resolved with chemo. It is overly risky to leave it in, or any of them? We would appreciate the pros & cons.
If there is a better place to post this, please let me know. Just looking to gain the wisdom of the wonderful ladies here. Looking at surgery in about two weeks, DD just wants it done so she doesn't have to stress about what might be lurking in there.0 -
Wayne, you are not 'chatting'. You are repeating yourself over and over. You asked a question but are not listening to or respecting the answers you are given.
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I think the best approach is to "ignore" Wayne.., then he'll have nothing to post a rebuttal about. All in, say "AY"!!!
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AY!!!!
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Ay!!!
It is beginning to distract from the purpose of this thread and I don't want to miss legitimate questions because they got lost amongst the clutter. 0 -
Wannacruise,
i know you are not looking for a medical answer here about the nodes. I'm guessing the surgeon has gone over what she/he thinks and you are now evaluating that.
I did have all my nodes removed when I had my mast but at the time they did not know it had spread to my spine. I did get lymphodema 18 months later so it can take a while to show up. As your DD already has the stage 4 dx I can't quite see why removing them now would be any help. Like shutting the stable door after the horse has bolted. That is my lay opinion anyway. Having lymphodema is not the worst thing but it is a pain in the a** and best avoided if at all possible.
Moira
P.S. A** is not arm by the way, although is it a pain in the arm.
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Hello all . . . last post which might generate some smiles.
If anything, I hope that one (1) patient, one only, saw the merits of simply asking a question or two of your oncologist.
Chemo<>slash 'n burn<>messes up the body and in partiucular, the mind. My wife of 50 years, cancer discovered in '95, quit chemo a few months ago (once we learned the truth), doing well, looks well. Mind, remembering things is messed up due to chemo.
Best to All,
Wayne0 -
I agree with the wise women before me...AnneMarie, Sue, Chrissy.
Our experiences are unique as are all of the choices of treatment we make. What works for you may not with someone else, or it could for a few. No matter what, it's a personal experience. Please respect what has already been said. Otherwise it's distracting and taking away from others posting here.
~Cate0 -
I blocked him! It's like magic "Wayne-Be-Gone". Do try it. Wish I had that ability in real life.
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WooHoo!! It is in fact "Wayne-be-gone". Magic! I too wish it were available for real life.
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Well, it's 'go' time, my DD just got her surgery date April 16th, less than 2 weeks away. She's happy that is going to be soon, but all of a sudden it's becomming very 'real' to her. She's not felt the need for counseling so far, but told me she might check into it, and I encouraged her to do so. She's more of a one-on-one type person, so sharing via group or online is just not her thing, so far. I guess I'm just looking for reassurance since we're treated her IBC aggressively so far, with great results, that we aren't choosing to be conservative at the risk of causing more problems down the line.
I'm finding a few more references to other Stage IV patients NOT have any auxillary nodes removed during mastectomy, so that's a relief that we're aren't the only one questioning the benefit of removing them at this stage. It's not something that can just be asked in the general surgery threads, because anyone NOT Stage IV already should have either SND and/or ALND done.
I just know since she is so active, (softball player her whole life), I know she hated being relegated to the bench during chemo and just got back on the field (albeit in a 'protected' position and having a runner when she gets on base). It seems to us that greatly increasing risk of developing lymphedema at her age (32) withoug some significant benefit is hard to justify. We've mentioned it to the surgeon and she agreed, but it was just kind of in passing, so I want to be sure we keep expressing it in these pre-op meetings to make sure we are all on the same page. If the surgeon disagrees, that's fine, but she needs to specifically articulate the reasons why making that decision is risky.
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WannaCruiz, it's terrific that your DD's surgery is going to be so soon. While scary, the anxiety waiting for surgery always seemed to be a lot worse than once I was on the other side. As for continuing to bring up the request for no node removable, once it is all agreed upon with the surgeon, may I suggest that it get mentioned to everyone who checks (nurses, anesthesiologist, PAs, and surgeon again) the day OF surgery. My surgical nurse made it clear to me that she had my back in surgery and asked me to reiterate things like the need for strong anti-nausea precautions, etc. The more people who know what the decision is, the less chance for a mistake. You might also ask the surgeon about what her protocol is if she changes her mind during surgery and feels she has to remove any nodes. Just so you're all clear.
Sending lots of hugs and Light to you and DD. Keep us posted!0 -
Get it in writing that you don't want any nodes removed. I said the same thing. I made a special trip to talk to the surgeon just about that specifically. We agreed that as I was already stage iv there was no reason to remove any. When I woke up from mast surgery, I was told by one of the nurses that 11 nodes were removed because they "looked strange". I was livid, but it was to late.
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