Not Buying Into It

hopefortomorrow

Pompeed, I don't think that your choices in treatment here have had any deleterious impact on others here, but your negativity has. Honestly it has been depressing to me to read how others have tried to comfort you, offer you suggestions, and commiserate with you, and you seem to reject so many well meaning people. I disagreed with you in some circumstances and yet I have cared, and found your latest drain experiences unfortunate and tried to express that to you in my earlier message. If there is any common ground you seem to dismiss it or ignore it.  

You did start this thread. Did you truly want any responses? If so, kind of responses did you want?

hopefortomorrow

Pompeed I just read your post  that I missed while i was writing a response to one of your others-Once again you are stating I am saying your should feel better because of your money-F*** that you know I have explained that many times-I just was asking your to look at the positive-because your first post was soooooo friggin negative.  I said that I did not intend it as an insult and you continue to  mention it- funny after you read it the first time, you went back and said-look at your post- that you could appreciate where I was coming from and explained to me how you do appreciate things in your life as you have worked since you were 14, etc. I thought that we had covered that, and we had reached a mutual understanding. When others brought it up again, you seemed to forget your original answer and come back to attack me. You understood what I originally implied. You stated it. Now you are trying to twist my words, and I consider that insulting. Don't talk out of both sides of your mouth!.

I certainly do know that money can't buy everything. I am not stupid. Quit taking my post to you out of context. I see it as a continuous opportunity you are taking to put me down and elevate yourself.

You know what- I have broad shoulders-you can put me down all you want.

Pompeed

Pam: Thanks for the good thoughts.  I made a surgical decision which I didn't want to make and I have to live with the consequences. Like we all do.  I'm not happy with the outcome but I can live with it.  If, however, I needed any more evidence that keeping away from the white coats from now on is a good idea for me, it was Monday's fiasco and the repeat on Wednesday and yesterday.  I'm a better care taker of my self than others are and it makes no sense wasting time giving others more opportunities to screw up.  That alone has put my head in a better place.

Flash:

I cannot image what a mess that was.  You're supposed to keep a hemostat on a 7 year old kid overnight when it's already clear she needs emergent care.  If the medical folks think of themselves as miracle workers, they need a poke in the eye with a sharp stick to understand that they wouldn't have the chance to work miracles if they didn't have patients who can keep their fingers in the dike while the MDs twiddle their thumbs.  I'm glad you and your daughter got through it.  My Hickman went south three times and the last landed me in hospital with septicemia.  Having holes in the body with tubes running in and out, however necessary, is dangerous and always will be.  The body just doesn't like foreign bodies like tubes and other gear which are left in it.

I've got the hole well covered with piles of sterile stuff and then a clean shirt with long sleeves and a clean stable jacket and so forth.  Don't think the bugs can get through that armour and I'll let my working student groom my horse for me and make another dressing change when I get back from the stable.  Thanks for the advice and concern.

worldwatcher

lago: "Why do I come back? I haven't finished my popcorn yet. ;-)"

I have followed this thread since the beginning without posting.  I have enough popcorn to share, lago.

I have chosen to go against the template that has been established as "standard of care", (which seems to be to be used for nearly all BCs...(from 1cm to the largest, from Grade 0 to Grade 3)  for personal  philosophical and physical reasons.  I understand the "evidence-based" theory.  I'm just unsure of the method of choosing just which evidence, and why it was chosen leading to this "standard", and is the ultimate goal patient benefit..or are there other beneficiaries in the mix?

For example, Herceptin has been universally touted as a miracle drug, not only here but in the media.  However, as nearly as I can find, with quite a bit of research, there is no method of receiving it without accompanying chemo. Nor can I find any trials that are ongoing in that area.  So, because I have refused chemo, I am refused Herceptin as well.

I could use some support in traveling this road, but haven't asked for it for the very reason that has been expressed on this thread.  Is my personal choice going to be seen as an affront? Is my language going to offend?  I applaud all the sisters that have offered advice and support to Pompeed without the need for her to accept it....you offered. That's all that's required, IMO.

I have chosen to accept that surgery with clean margins, radiation and a clean PET scan are MY avenue of care.  But, since I haven't yet found an oncologist that may accept my decision, I could use some advice on how best to monitor my situation.  Where do I go on BCO for this?  What tests do I need for ongoing monitoring and can my PCP order them?  

In my many years of life, I have experienced the tendency of some groups to adopt their opinion as "good" and a conflicting opinion as "bad".  BCO  is a "support" group, and very good at what it does in supporting the majority of members in their journey.  Is there some place where "renegades" can gather, vent their feelings, even "sound hostile", ask their questions, support each other in what may eventually turn out to have been a "bad" choice?

I haven't found it yet.  Can anyone point the way?

1Athena1

Worldwatcher,

I, too, chose unconventional avenues. I refused chemo and considered and then rejected rads. I had many reasons, but one was the complete lack of solid evidence that such treatments would help me. And BCO is generally not a place to express those feelings. My theory is that women as a species tend to be enforcers of the status quo. In addition, some people are so scared of cancer that any expression of doubt about treatment is perceived as a threat. Fear and not cancer is our worst enemy in many cases, IMO. The truth is, early stage bc is NOT the worst thing that can happen to a person by a long shot - so long as there is no metastasis, obviously.

Women on this forum who question chemo are routinely attacked. OR they are presumed to be alternative therapy proponents. I go for the science. My treatment choices were highly influenced by who I am as a person, my significant comorbidity and the scientific evidence regarding chemotherapy for early breast cancer. Regarding radiation, my medical history and lifestyle values and previous experiences played a major role along with the evidence of radiation in people with my cancer profile.

Unfortunately, while this thread started off as Pompeed declaring her choices and not everyone understanding that those were hers and that she wasn't telling anyone else what to do, it has degenerated into something else that IMO has more to do with Pompeed's personality than cancer. 

So, worldwatcher, to echo what you say, I haven't found any either. I am also hoping someone can point the way. 

worldwatcher

Athena:

I see much of the adjuvant treatment as "buying insurance", and chose the Contura radiation therapy as a place to make my post-surgery purchase.

My path report had some conflicting information....the 8% KI-67 score and low mitotic count don't make sense with the grade given which was based, I guess, solely on "proliferation"..  Those are low-aggression factors.  I would like to have had an OncotypeDX, but of course the HER2+ knocked that off the table...and the IHC HER was "equivocal" to start with.....more "template" treatment.

1Athena1

I actually wonder sometimes what an oncotype test would have said about me. I am not really a candidate with positive nodes but I would be curious to see what it would have yielded. In any case, I don't think it would have changed my mind. Oncotype tests are still new and there is no large body of epidemiological evidence to say whether it is a good predictor of chemo's utility.

Honestly, I often think that surgery gets underestimated in cancer treatment. It really can cure some cancers - even if they don't know which ones.

Yes, "template" treatment. I would have more respect if the cancer establishment was more forthcoming in admitting that most treatment is done blind, with the doctors having not the slightest idea of whether you, as an individual, happen to need it. 

kira1234

worldwatcher I like your idea with adjuvant treatment as buying insurance. A very good way to look at it. I also had the Contura radiation therapy. I found the Oncotype DX test for me just added to my frustration. All my factors looked to a good outcome, but my score from the Oncotype test came back in the gray zone. It just seems everywhere we look things are thrown at us to comfuse us.

I have decided at this point, I'm done with active treatment other than Femara, and will see how that goes. I have decided for  me to look towards the future which I hope will be cancer free. I feel there is much we can do to help that happen.

Pompeed, You are a gifted writer that's for sure, saying what many of us feel and or fear. I for one appreciate the dialoge you have prompted, but that's just me.

1Athena1

With breast cancer I just found that there are no answers. Only speculation, some more evidence-based than others.

Or statistics, which are routinely misused as predictors of what will happen to an individual. The most telling "statistic", and one that to me symbolizes the blind-leading-the-blind world of early breast cancer treatment was when I checked the so-called breast cancer risk calculator at the National Cancer Institute web site. It only works for women with no bc history, so you have to input data as things were before your dx. I answered the questions pretending I was a year before dx. My chances of getting breast cancer over the ensuing five years.....roll drums....0.6 percent.

To see the risk calculator, go to:   http://www.cancer.gov/bcrisktool/

(sorry - Google Chrome doesn't allow my links to appear "live") 

kadeeb

Pompeed,

Since logic is an important concept in your posts, may I point out some very logical and obvious points.

The "public" context of this forum would indicate that, logically, one would expect to be taken to the "public woodshed" if the poster is perceived as attacking those trying to help. You chose the venue. Your initial post was anything but "logical". It was raw emotion. You received an equally emotional response which should have been a "logical" expectation. You have shared very little of your specific case yet expected responses to agree with your point of view. Did you think you would post your ranting and everyone respond with "OK, it's your choice, die if you wish". Not a logical expectation. The ink on the page may be yours but everyone here knows what the story is and some know how it ends. When you enter the public forum you forfeit the argument that it's all about your choices. Your actions indicate that you want the friendship, experiences and advice of others. Your responses do not indicate that is true. 

You take to task those, who may have taken you to the "public woodshed" and in the same sentence do the same thing to them. Do you read these things before you post? Logic is a relative term. Yours, mine and others are all different.You're a lawyer. You know you cannot win a case without producing any evidence. To use the argument of logical thinking you must provide evidence of some. I rest my case.

 Somewhere around page 2 this ceased to be about breast cancer and treatment and turned into a personality tug of war. I wish you well in this journey. You appear to be strong and more than able to take control of your own course of action. I am glad you found a few people you consider to be friends and that have been helpful to you.  "That" is why we are here.  

.  

worldwatcher

My outcome at  the so-called breast cancer risk calculator at the National Cancer Institute web site would probably have been quite low...the main factor seems to have been my age of over 70 with HRT coming in a close second.  No family history, early pregnancies, breast-feeding, etc. etc.... 

 I always considered myself "low risk"....HA!

lago

I always consider my adjuvant treatment and hormone therapy as buying insurance. Yes I had a large aggressive tumor but  only one, no node or LVI so why shouldn't I think that surgery got it before it traveled else where… but I'm not much of a gambler so just in case I'm doing chemo/hormone therapy.

1Athena1

I considered myself practically "no risk" - which I presumably was - HA as well!

What pisses me off is how experts tell the media loud and clear how a risk factor for bc is a family history. Once again, this is a misleading use of statistics. If you HAVE a family history, you may be more likely to get bc, but up to 80 percent of women with bc have no family history. Makes my blood boil how these misleading messages reach even those of us who like to think of ourselves as fairly information savvy.

Pompeed

Hope: I don't know what would satisfy you.  I don't know what you want from me.  You don't like how I feel about my cancer situation.  I assume you don't like my decision to forgo the additional cancer treatments the MDs are pushing.

I have heard the advice and I acknowledge that it was all given in good faith.  But I am not reqiured to follow anyone else's advice any more than anyone else is required to follow mine.  Which is why I haven't given any advice to anyone else.  On this point, Worldwatcher is exactly right: one can lead the horse to water but there's no obligation on the part of the horse to drink.

Since it seems to have caused so much trouble, I'll apologize now for having left home at 13 years of age to avoid any further brutality, having made my way in the world with very little help, having put myself through college on full scholarships while working two jobs and put myself through grad school -- twice -- on scholarships while working two jobs and then being at least good enough at my profession to have the priviledge of filing a very middle class tax return.  I drive a very ancient car and would never think of spending $26 K on a vehicle.  And the two valuable musical instruments I own? I am giving those away now so that others can have the joy of playing them since I can't.  Maybe all of that will be sufficient self-revelation to temper and dispel and whittle the "she's rich" or "she's wealthy" or she was born with a silver spoon in her mouth or she's a "person of means" labels down to something close to reality. 

Having turned out a whole lot better than the statistics predicted would be my lot in life given where and what I came from and came through, none of that hard work or self-reliance or anything else kept cancer from my door.  Not only that, I am almost thirty years younger than my mother was when she got it.

Is it fair?  Hell no.  Am I happy?  Hardly. Is there anything I can do to turn the clock back or prevent what's happened?  No.  Do I feel like screaming my head off about another tour through medical hell?  Yes.  Is my reaction to all of this sh*t "negative?"  Yeah, it is.   I'm not a negative person at all but my reaction to what's going on in my life is certainly negative and I see no reason to apologize to anyone for it.  No one in her right mind jumps for joy and considers themselves lucky when they get the Big C news. Is anyone forced to listen to me sound off and complain?  No.  Is anyone forced to do what I have decided to do or not do?  No. 

And what I've learned from this thread is exactly what World and Athena have just alluded to: there seems to be little space on this site for those who are managing their lives and their cancer  other than as the standard of care medical model directs.  Those who are making decisions outside of the mainstream take a pretty severe beating from some quarters here just for having the guts to say, quite openly, that they are making decisions for themselves which are outside of the mainstream.

worldwatcher

Athena: "Once again, this is a misleading use of statistics. If you HAVE a family history, you may be more likely to get bc, but up to 80 percent of women with bc have no family history. Makes my blood boil how these misleading messages reach even those of us who like to think of ourselves as fairly information savvy."

In my case, I wouldn't have skipped a mammo in January of 2009 if I'd had THAT particular statistic!  All those years of negative mammos, and then I find the lump myself!

Lago, I haven't ruled out the hormonals completely.  Still searching for an onc, but I'm on Medicare and it's a very limited pool for my plan.

Pompeed

lago:

You're doing chemo and hormone therapy because that's what you have choosen as your best chance of living the life you want to live.  No one can fault you for those choices for yourself and no one should even dare to suggest, based on their own experience, that you should do something else instead.

And I hope, that as long as you don't have to deal with Nurse R, your treatment sessions will be tolerable, free of side effects, short in duration and, most of all, effective.

lago

Worldwatcher don't get me started on health-care and medicare. (I know all the issues my parents go through with medicare).  I hope you find the care you need once you decide what you want to pursue.

I know about your Hercepin issue from another thread. It's irritating that you can't get it. While the stats show it works better with chemo we both know that it's better to have it with or without chemo then not to have it if you are HER2+

worldwatcher

Lago: While the stats show it works better with chemo we both know that it's better to have it with or without chemo then not to have it if you are HER2+

As my now 30-year-old grandson used to say when he was little, "IT AIN'T FAIR!"

1Athena1

"IT AIN'T FAIR!"

Ooh, that is my favorite saying these days. I find it's therapeutic to just repeat it, for some silly reason. 

worldwatcher

otter

I am considering this as a Christmas present for my cousin's sons.  The full, boxed set is now available in paperback:  http://www.lemonysnicket.com/books.html

otter

[Edited to clarify:  I am not suggesting that anyone else follow my lead, because that would violate the Community Rules.  I'm just sayin'.]

worldwatcher

Otter, I'm gonna keep "More Misfortune" OFF my Christmas wish list!

kira1234

I'll second that not on my list either.

StillHere

Pompeed - just saw your post - I don't visit often. I agree with you 100% - and thank you for sharing. If I knew then what I know now - I would never have agreed to mastectomy and DIEP reconstruction. Successful surgeries both (thank you Johns Hopkins for attending to the physical and completely ignoring the pysche. Way to go!!!) -  permanent damage to my psyche - not worth it. Negativity be damned - life is not rainbows and unicorns and pretty pink teddy  bears - and make me barf with the pink ribbons - disgusting. Those who wield the POSITIVITY IS ALL banner have no idea the damage they do. We need a support group for the negative. I'd join.

The reason my screen name is "StillHere" is because I wish I weren't. The full name would read StillHereUnfortunately - but whatever. 

scuttlers

This thread has almost become my addiction.  It takes all the different personalities on the forum and bares them to the core in a very short period of time.  I, for one, absolutely love Pompeed. She is articulate, thought provoking, and has caused me to take a few steps back to look how medical care is "handled" by the different individuals who seek it.  

I think the first issue came with posting in the "help me get through treatment" thread.  But we hurdled that one, and moved on.  Like I wrote - my brother is a veterinarian - I get better and more compassionate "care" from him than from the "people docs".  (If it had been legal - I would have had him do my mastectomy ...)

I work (OK, don't really work anymore, so must say worked), in surgery for over 25 years - and I know what happens behind those hallowed doors.  You think I was not scared to be the one on the table???!!!???

I made it VERY CLEAR to each and every one of my doctors that I was to remain the ONE in charge of my care.  If they couldn't deal with it, then I would move on.  I have kept all the docs from the beginning.  I question them, I tell them what I want, I tell them what we are going to do, I give them literature to read and then I test them on the content (they know the "punishment" for not passing...).

Medical care is money driven.  And especially cancer care.  Getting ready to enter my second year here - first year $450,000+ (doesn't include travel, hotels, gas, prescriptions, home essentials) in doctor and clinic charges.  This year, so far, a little over $270,000 (again doesn't include those other items which since February just prescriptions alone are running over $3,000 per month).  It is going to be very interesting when I move into the Medicare arena and out of the private insurance that has paid so efficiently in the past two years.  Will my doctors be so understanding at that point?

I don't want this thread moved, and I certainly do not want it to go away.   My point:  (HA! bet you thought I did not have one ...) each of us should have the right, the privilege, the ability to choose EXACTLY what, who, when, where, and how our own body is treated - without ridicule, without chastisement, and without fear.

kira1234

scuttlers, very well stated. I think BC is very much money motivated, as well as being motivated by fear of law suits by us. You have a very unusual position having been in the medical field to know what goes on behind the closed doors.

I agree I feel this tread has been useful for many of us if for no other reason it has given voice to our questions. In my case it has helped me make choices for myself that are I hope right for  me.

hopefortomorrow

Pompeed I don't want anything from you. I just responded to your post. I originally signed on to this post because I felt you had such a negative attitude and were so focused on that I was concerned for your well-being. It has been proven that people with more positive mental attitudes and or some sort of spiritual belief form usually have higher recovery rates. I was trying to help.

Don't assume anything. I never said anything about your choice of treatment. I find myself making a 'choice' for treatment is a very scary thing. I am not even sure if the treatment I have chosen is right for me. My cancer was just found this fall. I start Chemo next thursday. I am scared.

Why have I kept reading? I have been attracted here to the thinking of the ladies who have positve thoughts, already have been through this longer than myself, and in comforting you, they actually  indirectly comforted me (as a reader of this thread) and quieted some of my fears.

It interests me how these women have dealt with their cancer and the how and why of they have chosen their personal direction. I hope to learn from their experiences, or at least take something little for myself to help me cope with thisinvisible disease that has invaded my body.

AmyIsStrong

I  have read all 11 pages of this thread with a whole mix of emotions. What a lot of passion and intensity has been expressed along the way.

Pompeed - I think that you hit a nerve with your original post (which I have read several times). Your audience is ALL breast cancer women.  Every one of us has been confronted with this disease to one degree or another.  Almost all of us have chosen to go the standard of care medical route. It is long, difficult and risky. (But of course going any other route contains risks as well.)  So when we read words like "pointless" and talk aout 'being sold' a cure, it calls into question our choices, whether you intended that or not.  I truly believe you did not intend to put down anyone else's decisions. And if you were talking to a group of random healthy non-cancer-sufferers, they would probably have been able to say "Oh I see her decision. It is interesting. I wish her the best."  But with THIS specific audience, it was very triggering and caused quite a firestorm of reaction.  Some women were concerned about your mental/emotional state and offered support there, others tried reassurance, others were angry,  etc.   

I think the tone of the original post bears some responsibility for eliciting the reactions that came.  I think it is a little disingenuous to write such strong, blanket statements and then shrug and then seem surprised at the reaction.  

But nonetheless, there is a lot of support here. And that, to me, speaks of the care and concern that exists at BCO and in the breast cancer sisterhood overall.

Two things that I want to add -  I am concerned about your continued depersonalizing of the medical professionals by calling them 'white coats.'  I am no huge worshipper of medical people, but I do recognize them as human beings, who for the most part, are trying to do a good job with the tools that they have.  They are imperfect, their tools are imperfect, the whole thing is much more an art than a science, but the continual depersonalizing of them is just as offensive as the way people do it to lawyers (Jokes like: What do you call a busload of lawyers at the bottom of the ocean?  A good start.")  People, whether doctors, lawyers or any other profession, are more than their professions, more than the Esq or MD after their name and more than the 'white coats' that they wear.  I think it is not helpful, when facing a serious disease like we all are, to paint them all with the same brush, the same suspicions, the same disrespect.  it isn't any different than calling all lawyers 'shysters', saying they're just in it for the money, etc. I hope I have made my point.

Second, I read about your concerns of the side effects of treatment.  I appreciate that they are very real to you, and reading on these boards, you are confronted with many of them and it can feel overwhelming.  However, many women have written to you saying that they did not experience many/most of those SEs and even those who did mostly had them resolve after treatment was over. That is my case - I had a lot of treatment, which concluded in May of this year, and I am now back at the gym every day, working hard, training and lifting, working full time at my job, actively involved with family and friends and my community and living a wonderful life.  I appreciate the fear of the side effects, but I think it is important to keep them in perspective. Yes, for a few months, my life was all about my disease, but as active treatment concluded, that phase moved into the past. My life is absolutely not all about my disease. And I am hoping that the many many years I expect to live in the future will make the months that I spent in treatment a smaller and smaller slice of my life story.

Women who choose non traditional treatments should do so (IMHO) because they truly are convinced that it is the best path for them, not out of fear or avoidance of what  might happen. I guess the way I see it is - we already HAVE cancer, - it is not something that might happen. It already DID happen. As much as we hate it, it is fact.  We have to do what we decide is our best shot at beating it and living the best/longest life we can, balancing out those two elements (best and longest). You mention that none of the medical professional have been through this. I am confused by people who somehow think that we are served best by those who have had personal experience.  It would be a very limited world if only doctors who were burn victims treated burn victims, doctors who treated HIV were only HIV pos themselves, only diabetic doctors treat diabetes, etc.    I never asked the lawyer who handled my divorce if she had been divorced herself.  I hope you see where this is going.  If a medical professional knows their specialty and is compassionate, that is enough for me. I don't need their personal health profile.  

It seems a positive thing that the various specialists you spoke with had a variety of options of treatment for you.  Perhaps you can find one that you trust among that group and choose an approach that you feel comfortable with.  And whatever you choose, I hope it is effective. I hope you (and all of us) live a long, healthy life free from recurrance and/or any other cancer. I would love us all to be at the 20,30,40,50 year anniversary celebrations of BCO together.

If I can offer any help or support in any way, please let me know. Send a PM if you would like.

And to HOPEFORTOMORROW who starts chemo next week, please join the Starting Chemo in Nov or Dec threads - you will meet other ladies who are going through this with you and you will form bonds with them that will help you make it through.  I was in the April 2009 group and we are a close group to this day.

I wish all of us well.

Amy

GointoCarolina

I was so sad to read this post,especially since I was 20 when I watched my beloved older sister die at age 31 of leukemia.Her last days were very bad,back then (early 70's) there really was not much that could be done for treatment.If this happened today,she would likely not have died.All through my cancer journey,from the night I found my lump and today while I am researching reconstruction, I have felt her presence urging me on.While I was so sick during chemo,I felt her holding my hand.I am so lucky,herceptin was available to me and I had so many reasons to not give up,my husband,my pets,my love of the property I live on.My one big dream while I was sick was to be able to walk to the creek again.And now I walk there almost daily,food  tastes SO good,I just plain love to breathe.I loved life before,but now I savor every second.I wish you the best Pompeed,we all make choices and I respect that,it just breaks my heart to hear how you are feeling.

suzieq60

Amy - couldn't have said it better myself.

As for the whitecoat comment - Dr Weiss herself recommended pompeed come to this site. Does she know Dr Weiss has been diagnosed with breast cancer? She founded this site to help us and it is a lifeline for me.

The person who made the comment about popcorn is off the planet. This isn't a soap opera, this is real life and to think you are enjoying this exchange like watching a movie is quite sad.