Not Buying Into It

squidwitch42

We did have a newbie come in and post about starting chemo. Her name is Lawteach, and I see three of us responded. I wish we had given her more attention and support.

1Athena1

Same here. Where is she?

amym159

The discussion about statistics is really interesting to me. I am a midwife and have spent years discussing stats with pregnant women related to risks of certain bad outcomes and risks/benefits of various procedures. And  I have encountered this in my personal health related to pregnancy (should I do genetic testing because I am over 35), breast cancer and other things.

In my opininon using statistics to help with health decisions is really useful for some some people and completely worthless for others (and everything in between). I personally find that kind of information really helpful.  I think it has to do with one's personality, culture, views/feelings about how much the individual should know as much as they can and make their own decisions or let the experts decide what is best. I understand the uncertainty but for me knowing the numbers is reassuring. 

My 2 cents on a snowy morning:)

Lowrider54

I sent Lawteach a PM - guided her to the abbreviations and newbie stuff. 

1Athena1

((((Lowrider))))

brendaclee3

Hi Pompeed~I feel your pain~really I do.  I was a health nut and grew my own veggies on my farm.  I had a husband and a dog and goats and cows.  Then I went in for a routine mammogram and "Damn"  where'd that cancer come from?  No one in my entire family tree has ever had it.  Now, 11 years later, the farm, the husband, the dog, the goats, are all gone, BUT, I am very happy.  Yes, the boobs leave much to be desired so finally, after 11 years, I'm going in to have the DIEP surgery.  This was not a snap decision, but I feel good about it.  My cancer never came back and I hardly ever think about it unless I succumb to eating a chili dog or a greasy piece of pizza.  As you said though, nobody knows where this stuff comes from.  By the way, I had chemo for 8 months (alone); the cancer was in my lymph nodes.  I chose chemo because at that time, it was the best they had to offer and I couldn't just sit around hoping the cancer would go away.  Well, it worked, at least for now and I've had 11 more years of happiness which I may not have had before.  I am determined to make it through whatever life deals me.  I wish I could make you feel better.  There really is hope and happiness just around the corner.  I'm still alone, but I've learned to be happy. 

pumela115

Allalone,      I was tested for BRCA 1 & 2. I was 52 at the time, and as you can see i was ER, PR+.. This thread is very interesting! So i'm not sure why they tested me. Hope everyone is well today!!            Pam

lago

allalone I was tested (age 49) triple positive with no family history. I am Ashkenazi which does put me at a higher risk for the gene. Once my PS was informed of this he felt I should take the test. The genetic counselor initially didn't think I should based on her stats… which basically had me at a lower risk for having breast cancer than if I didn't. Yeah she screwed up something.

I tested negative.

Anonymous

Gutsy - Very well stated, I have learned much, I'm the kind of woman that takes it all in reading, hearing then processes it, determining what's best for me and then make my choice based on my past experiences and what options, etc. I have going forward...I appreciate everyone's posts, good, bad, indifferent and so on, thanks you all ladies.

Pompeed

Gutsy wrote: 

            "I can tell you people are definitely influenced by what others are writing on this board."  

When did I disgree with this?  Never. 

But influence, in terms of getting information from others and using it to one's own advantage, is entirely different from going after someone tooth and tongs, calling them names, attacking them personally in whatever way comes to mind however factually false it might be, discrediting what they have to say and backhanding people because one doesn't like their choices. 

In my view, that's never a way to win friends of influence people, it's destructive to any rational exchange of useful information and there's no excuse for it.  Ever.  What some are only too eager to do behind the protective cover of their screen names they wouldn't have the guts to do in person and face to face with a stranger.

Gutsy also wrote:

            "Pompeed in all respect, you may want to read some of the posts you wrote on page one of this threat, to have a bit of understanding why some of us, including or especially me jumped out of their seat."

This is more of the same lashing: Gutsy is still blaming me for her reactions to comments that had nothing to do with her.  The private notes Gutsy sent me were vicious and judgmental.  The personal accusations were appalling.  If I put the notes up in public for others to read, I think most would turn purple.   There's no excuse for anyone to behave like that.  None.  All it says is that the one doing the beating has no self-control and even less compassion or empathy.

What Gutsy hasn't had the guts to do is apologize.  In public or private.  And from my point of view, regardless of what I wrote -- which had nothing to do with Gutsy or anyone else in any case -- she's still attempting to make me responsible for her own lack of self control. If all one has to offer is insults, best keep quiet. 

Gutsy: it's too late for insincere schmoozing intended will make every thing all nice nice and friendly friendly and sugar coated and forgiven and prettied up.

Pompeed

lago:

 That's the latest disagreement I'm hearing.  One breast surgeon says skip it: likely to be negative so why bother.  Genetic counselor is pressing it because I have risk factors but none are in the top tier.  Which is why the first breast surgeon says skip it.  Other breast surgeon says get it done.  But thinks it will be negative.  One oncologist says skip it and the other says get it done.

I told 'em  all: when you all work it out, you let me know the decision and then I'll think about it for awhile.  You can find me at the stable.   

I swear: half of the frustration for the patient is the constant professional disagreements.

suzieq60

Pompeed - you wrote "This is more of the same lashing: Gutsy is still blaming me for her reactions to comments that had nothing to do with her.  "

I beg to differ, your comments have everything to do with us. We are all going through the same journey here, some much more difficult than others.

 I actually spent the time going back and reading this whole thread today. You were offered so much help and support by some very lovely women but you replied with arguments and the very occasional thanks. 

"If all one has to offer is insults, best keep quiet." - you should take your own advice on this one.

What Gutsy wrote is quite true and she has the right to her opinion as you have the right to your opinion - of which we have been told ad infinitum.

Sue

riley702

FWIW, all the flutter about Pompeed not being properly grateful for all the advice given here reminds me of a t-shirt I once had, that read: "Before you 'help' me, make sure I want it first." Yes, we all come here to support each other, but that doesn't mean the other person is under any obligation to take, or even acknowledge, unsolicited advice. And yes, I've offered unsolicited advice, and yes, sometimes it's not acknowledged. Doesn't mean I was wrong to offer it, but it also wasn't wrong for the other person to ignore it.

Which leads me to: others being influenced by what we say on this forum. I think blaming the posters for how other people respond to their posts is too heavy a burden to ask them to carry. We're all adults here discussing our cancer - most of us are not medical professionals, and should ourselves shoulder the responsibility for what we take away from these discussions. In my opinion.

lmc1970

Well said Carolyn )

misfit

This is kind of a rant I guess, at no one in particular...

So we all have to make sure we don't say anything that others (especially the poor defenseless newbies) might find unpleasant and/or scary? Nonsense. Yes people are influenced by what is written on this board so we all have a responsibility to make sure any information presented as fact truly is just that, and thankfully there are many amazingly knowledgeable people here who can make sure this is the case. But trying to silence someone who is speaking about their own thoughts, feelings and experiences - in order to protect others - is in my opinion going too far. It's patronizing. It bothers me that it also seems to be a gender thing. I can't imagine that this would be an issue if a group of men were having a similar discussion.

motherofpatient

Jessicav - thanks for posting te poen-it is oneof my favorites.

Ladies, as to staging - at first my daughter was told hers was Stage I, but that was after just the inital mammo and biospy. Then a very alert radiologist noticed a second suspicious area but the MRI guided biopsy said it was negative. The surgeon elected to remove it anyway and it's a good thing he did because it tested positive with the larger sample and one node tested positive so she move to Stage IIa. With "dirty" margins comes another set back.

My advice - read everything you can that is from medical sources and from patients, but also learn to read the methodology part of any study - details of subjects' diagnoses (HER,PR,ER, herceptin resistant, tamoxifen metabolism high or low, genetics, diabetes, obesity, age, tumor size, growth rate, etc) - too much info out there lumps everyone into one or two categories and all these "confounding" variables, as researchers call them, make a big difference to the individual. Overwhelming - PTPH1 is over expressed in 49% of BC; DNA errors, PTEN, high miRNA21, WAT-LRP6 CYP2D6 on chromosome 22 - so what does that mean? How can we not rely on doctors - white coats- to sort this out?

1Athena1

OOps

lago

riley702 wrote:

… all the flutter about Pompeed not being properly grateful for all the advice given here reminds me of a t-shirt I once had, that read: "Before you 'help' me, make sure I want it first."…

I totally understand this. I am one of those people who tend to give out unsolicited advice. Maybe the it's the teacher in me, or shall I say my dad (the professor) who passed it down to his kids. I might be well meaning and generous with my advice but that doesn't mean someone wants to hear it. If they don't it comes over like you're lecturing/scolding them rather than helping.

Yes some people come here to rant, support or advice.  I think pompeed was ranting and maybe wanted a little support since she did post in the section "help me get through treatment" Sounds like her team still can't get on the same page. That's totally frustrating.

1Athena1

Misfit wrote: 

But trying to silence someone who is speaking about their own thoughts, feelings and experiences - in order to protect others - is in my opinion going too far. It's patronizing. It bothers me that it also seems to be a gender thing. I can't imagine that this would be an issue if a group of men were having a similar discussion.

Yes, yes and yes! I find it offensive and sexist. We women are such fragile weak little things that we need to be handed candy no matter what???? Why are we women such consensus enforcers? &%$*## consensus! There is no such thing; let's stop pretending it has to exist.

This is an adultforum and we cannot be responsible for gullible people who might read one post and march off to follow that stranger's advice. And if someone does follow our advice, well, considering there is no known cure for bc, it's not as if our doctors have the answer,

Sorry, life is tough...don't we all know it. If you can't legislate stupidity, you certainly can't patrol it. There has to be some personal responsibility for anyone who reads here, and some spunk. If there isn't we here cannot fix the world. Sound patronizing? No. I think we all just have enough on our shoulders. The last thing we need as cancer patients is to feel pressured to dumb ourselves down or sugarcoat our advice or patronize or tread "carefully" for the sake of the weakest link. If I wanted to be a politician I would have run for office.

Edited to clarify: Offer support, empathy, compassion and friendship as well as an ear? Yes.  Wrap each other in our arbitrarily chosen protective blanket? Never!

lovemyfamilysomuch

Interesting comments about the gender thing.  This is my area of professional interest, so I appreciate the comments.  Makes me think and I like to do that!

Pompeed

Suepen wrote:

"What Gutsy wrote is quite true and she has the right to her opinion as you have the right to your opinion - of which we have been told ad infinitum."

Gutsy knows exactly what she wrote to me privately and I know what it was like to be new to the site and open up her note as the first I received from anyone and read it.  And what's in her private traffic to me is abuse.  Vicious abuse intended to be just that.  Not helpful, not supportive. Nothing in a series of notes but abuse. 

To paraphrase Gutsy, people come to this site for information and emotional support.  With that I agree and I dare say everyone has her own reasons.  If that's what Gutsy thinks the site if for, she certainly didn't have any intention of upholding those values when she wrote to me.  And if anyone doubts my assessment of the ink that's dry on her pages to me, I'll make her pages public and everyone can have an opinon about the core value of, among other things, telling a total stranger she doesn't even have cancer. 

Since no one else here has read the private traffic, there's no basis for giving an opinon on the content itself or the value of it much less offering praise for it.  Best to know what the facts are before supporting one side or the other.  There's no excuse for what Gutsy wrote in public, took down knowing if was abusive and generated heat from others and then sent to me privately instead.  Especially in place like this.  Ever. 

So while Gutsy -- and everyone else -- may have an opinion, no one has the right to abuse anyone else.  Ever.  

If there isn't unanimous support for simple concept of civility and consistent application of the Golden Rule towards others on this site, there certainly should be.

gutsy

You know what ladies, I don't know what to say anymore. I have said some strong things  but was given some extremely nasty emails  by this person.

It seems that whatever you write on this thread in a kind manner, it gets turned around by some into somthing nasty and making you out to be a gullible fool and grinding you into the ground as if you are so stupid. Yes, I am the stupid  gullible one who learns from others experiences, expertise and may incorporate some of this learning into discussions with my healthcare team. Yes, oncotype testing, reconstruction options, se of chemotherapy and more. I take away information from this board, I do not blindly follow it. I am also a health professional, have a graduate degree and a mother of three. Unfortunately they could not legislate my stupidity Athena.

My purpose for being on this board, is to share experiences, support others, receive support, learn from others etc. I can be strong also, but certainly don't get my kicks from insulting others.  I will speak up when I see something that screams red flags and almost appears to be dangerous. Part of it is protecting others who may be early in their cancer journey and don't need to be scared further into doom and gloom, despair and hopelessness. Allright that is probably not my job.  

Lowrider54

If you don't have confidence in your treatment team - especially if they can't even agree...geez, isn't it hard enough for us to navigate through the seemingly endless list of choices without having our docs on the same page?  Holy buckets - they ought to hand us a T-Shirt with a huge '?' on the front and What the F**** on the back - it sure is what it feels like after hearing those first words...'you have breast cancer' and the next 3 months are going to have you walking around like a zombie, spinning like a tilt-a-whirl, on an emotional roller coaster the likes of which you have never seen, and be spitting fire with a forked tonge you never knew you had.  And for darn sure, you are not in Kansas anymore and feel very much like the house dropped right on you. 

Is there anyone that came to this site without those feelings?  You cannot vent them to your family and friends with brutal honesty - you still try to protect them.  The place that you can is here - I really thought I would have to grow alligator hide to weather some of the 'attacks' on my 'venting' - turns out, I just needed to get through the process in my own way until I understood what was happening to me and had a concrete direction to go until I found the yellow brick road - and we all know the pitfalls along that path and that is does not lead to the wizard but just a man behind a curtain - sadly, our journey is very real and we never wake up from the dream but we do discover a new appreciation for those we have surrounded ourselves with - friends, co-workers, neighbors and family and learn that we have no time for those that don't get it and cherish those that try. 

Just my thought for the day...LowRider

1Athena1

Gutsy, I hope you are not suggesting that I have sent you any e-mails? I haven't communicated with you at all, nor were you even on my mind while I was writing my last post, so "this person" is someone else.

gutsy

No, you are not this person. I did not want to say the name, because I will get publicly crucified again and again. I have to say that I did feel taken aback by the stupidity gullible comments. I can't be the only person who does take information written on the board and look into it further. If someone suggested I have a tea-tree oil bath every night to fight my cancer, yep you can classify me as the gullible one.

Anonymous

Well, this is interesting. Personally, I never felt the need to vent in here--bc.org-- (unless provoked) and I was able to express all of my feelings to friends and family. I guess I am lucky, in that regard. Though I know people have to resort to on-line communication (which is so often misconstrued) it sure is easier to communicate in person. I can only *try* to imagine how isolating it must feel to have forums such as these as one's primary source of talking openly and honestly about their BC experience(s).

Heidi (currently nailed to her recliner by two snoring puppies when she really should be finishing putting up her holiday decorations)

1Athena1

Heidi, that's TOO sweet! What breed are they?

mollynminnie

Hi all...

Once again I think we should pretend that Pompeed's initial post included a "RANT" disclaimer in the subject line.  But being new to this site, we cannot fault her for not knowing to do that.

Take a look again at some of Pompeed's statements, but try to read them though the context of a "RANT" rather than what we percieved as someone asking for opinions... 

POMPEED wrote:

"Cure" is a stupid word and all of that nonsense we have been fed over the years about living a cancer preventive life was a complete lie.  

 cancer prevention is a complete hoax.

Pointless.  All pointless to spend so much of my life's minutes which are left with the white coats who are always willing to sacrifice the quality of life for the quanitity of it.  That's what the medical community sells: "take this and do that and get more of this and have that done and this done."  More, more, more.  Always more.  More drugs, more surgery, more needles, more pain, more of everything that's horrible and life altering.

  Because there is no cure and we are fooling ourselves if we think that's what we are buying by gritting our teeth and tolerating the misery of treatment. 

  Pointless.  Just pointless for me to get sucked into in procedures which are going to be worse for me than the disease but are being "sold" to me as "cures." 

False hope -- which is what all of that "cure" nonsense is, really -- is a very dangerous thing.  And trying to imagine what I'm going to find more acceptable in comparison to something else which sounds equally horrible with respect to experiences I've never had before is absurd when one stops to think about it. 

 What can that surgeon possibily know about dealing with the revulsion of a husband or a lover?

I will admit that when I read Pompeed's original post I was pissed. I categorically do not agree with her statements!  I went through every treatment that could be thrown at me and I hope and think that I have been cured.  I love my life and am soooo grateful to my medical team who 100% saved my life!  So it did seem to me that Pompeed was stating that everything I have put faith in is a lie.

BUT- I know better.  I know what I experienced and what it did for me.  Pompeed is entitled to rant, and that is excatly what she did.  If we stop and look at her posts as just that, then we do not feel as if our experiences and decisions are being questioned.

I feel sorry for Pompeed if this origional post still echoes what she feels today.  But I do not know her.  All I do know is what I have experienced.  And this Stage 3, Grade 3. HUGE tumour, BRCA1 positive single mom is living and loving her life-  all thanks to the treatments and amazing Doctors I was blessed with.  I KNOW that is why I am still here- 4 and a half years later.

Molly

worldwatcher

I've been on this thread since the beginning, and it's been illuminating in seeing how some women are able to take Pompeed's posts and make them personal to themselves.  It's also kind of fun to watch as some ladies who I'm sure, would hesitate to approach a stranger in person and unload on them yet will jump in a forum thread and blast away over the OPINIONS of others.

Perhaps the administrators at BCO should appoint an "opinion czar" who will vet every post and redact any phrases that may be an affront to someone.

Formatting our posts in the future should prove a valuable way to take our minds off the fact that we are possibly facing a death sentence. 

Anonymous

This thread reminds me of football--- a lot of Monday morning quarterbacking.

But, since we are on the subject of football Athena, the pups are Boston Terriers and their names are Brady & Gisele.

Yep, we're Patriots fans. (OK, I'm really a *Brady* fan ---sigh)