Not Buying Into It

I'm sorry, but being part of the "medical community" myself, I take offense to some of your statements. Not all of us are pill pushers and spent on putting our patients through hell with various procedures and treatments. It's unfortunate that is your perspective on things and that you have chosen to look at only the negative side of all of this.

At the risk of sounding like a PollyAnna, I will say that I for one have chosen to look at life and all of it's challenges from a different light. My glass is 1/2 full, not 1/2 empty. I really do believe that all things happen for a reason, and that every experience (good or bad) enriches us in some sort of fashion. I've been through hell and back with my own health and personal issues. There certainly have been times where I just wanted to give up and throw in the towel. One of those times was 10 years ago after a bout with meningitis. The illness left me in Status Migrainosis (a constant, unrelenting migraine) for 5 straight months. Nothing would touch it for any length of time. I was in incredible pain every minute of my life. I was so sensitive to sound that I had to wear earplugs a majority of the day. Watching TV or movies would make me nauseous, and going to the Mall or any other public place was out of the question. The noise was excrutiating and the activity of seeing people walking around made me sick. I was drugged up with everything imaginable to just make it through the day and get some sleep at night. It was either that or give up and overdose myself, which would have been very easy to do. But, with time, things gradually got better and I got my life back again. And, to be completely honest, I would not trade that experience for anything. I have a much better understanding of myself and the true grit that I am made of. If I can get through that, I know that I can get through anything. And, I can now relate to others that suffer from migraines, even if they are fortunate to only get them "now and then" compared to the extended agony that I went through. 

I share that experience not to tap myself on the back or to "one up" anyone else, but as an example. My bout with breast cancer has been relatively easy thus far compared to that nightmare. But, I know that could all change in a minute if I am ever diagnosed with mets. I wouldn't want it any other way, though. Sure, we all are going to die someday anyway. But I want to truly LIVE with the time that I have left. And, if surgery, radiation, meds, healthy eating and exercise, etc. buys me more time, then I'm all for it. There are too many more things in life that I want to experience. And, I want to go down being known as a woman who tackled life with gusto instead of waiting for it to end.  

Pompeed,

This is a "Help me get through treatment forum," and it sounds like you are trying to convince people to reject treatment.  This is just plain irresponsible.  Many people who have actually been through treatment have responded and have written about how treatment is not what you say it is (even though you haven't actually been through treatment).  Is there an agenda here?  Why so much emphasis on the uselessness of treatment?  Hmmm....

By the way, I have been through treatment and it barely had any impact on my schedule.  I went from chemotherapy to work, did a little extra sleeping on the weekends. 

Pompeed, I lost both my parents to cancer and their last few months were horrendous, with the cutting and carving.  That was then this is now and so many new treatments and medicines are available.  When I was diagnosed in August of 2009, I immediately flashed on both my parents deaths.  I found a good team and placed my trust in them, one of the team is my therapist, since it was obvious I was suffering from depression and anxiety.  With a lot of support and a lot of hard work, I've come out of the tunnel.  One woman on these boards said it so well, paraphrasing, you only need to show up for your treatment of the day, not do the entire journey each day.  Do not discount PTSD, you've been thru a terrible medical journey.  I'm thinking of you  and hoping you'll  give yourself a chance. Karen

Yeah, it seems like you are working off your rage.  Fine, go ahead..  Everybody deals differently.  Some go into immediate "pink warrior" mode, poster girls for positiveness.  Some need to come at it from a negative stance.  That's o.k. too.  I don't feel like you are judging anyone else's choices, maybe just venting to help you get to making your own choices.  B/C is nothing if not overwhelming...at least for a while.  Then you find your own way to get a grip and move forward on your own terms. 

Let me ask you this...What can we do to help you?   Every woman who has replied to you, even the ones that got onto you, have read your words and taken them to heart.  You have touched them with your story, and they have given real responses with mixed feelings.  It's ten times better than the "script" you get read to you at the doctor's office, but it all has it's place for different reasons.

Will you be most happy fighting/treating your B/C, or not doing anything further?  You don't need to reply on that, just figure it out.  Me, I like complaining.  So I chose to do the surgery, rads & hormonal crap and it's pretty therapeutic to complain about it as I go along and if I can disparage the whole process in an absurd manner, all the better.  It works for me.  You will find your way too.  Good Luck Pompeed!

I hear ya Pompeed, loud and clear. Your frustrations clearly show the anxieites we go through, the fear, and stress, starting on the decision side, clear through to looking death in the eye.

As I get through my third Chemo, still jumping back and forth of whether I should have elected that, I realize, that after all the research, conflicting advice, and tainted trials, they are all unnerving decisions That helpless feeling is still there. Some of my feelings because of having to be my own adovcate in the past, and knowing that no one has it cut and dried as to what we should do, we really have to see all the facts, real facts, both sides, which gives us even more stress. Doctors just play the numbers game with us. Thats their job, and about all they can do, although an advocate for my personal case would have been great. I swear if not for me, I'd still be waiting 9 months later for the third surgery.

Life's a crap shoot, and when I get through this I plan on living it. The 7 months of not having my normal me, I figure, will give me alot of strength when I resume my life. I don't put too much pressure on myself for now, I try to stay in a passive state, and just get the job done, freeing myself from uneeded stress. And I'd like to add, making deals with myself that if a treatment isn't working dfor my lifestyle, I'm done with it. Especially the Femara. But I feel I have to at least try it.

Best wishes to you too. . I've had a good life, I have to say. Even with alot of health issues. But I have seen people get their life back.

Pompeed,

Breast cancer or any cancer is no walk in the park. Many ladies with breast cancer take anti depressants to help curb depression. I was already depressed when I was first diagnosed because my brother who was my only sibling ,had died 7 months earlier at age 45. 

 Cancer treatments are different for each of us. Some have very little complications while taking chemo and others like myself have a hard time taking it. I didnt burn at all with radiation but many get severe burns. In all honesty, my doctors expected me to breeze thru chemo and burn like hell from rads due to a skin disease I have...but it was the opposite.

 I can barely remember my daughter's graduation because I was in a chemo fog. There's only one business here that sells wigs and it just so happens to be the best place for prom dresses etc. so we ended up shopping at the same place. As I sat sleeping in a comfy chair in the corner, the wonderful ladies who ran the business helped my daughter find the perfect dress, jewelry, shoes, etc.

There were angels in my life who made us meals, cookies, sent flowers and cards, called to see if I needed anything etc.

Life isnt over just because we get cancer. I'm the 4th to get breast cancer in my family. My Mom died of lung cancer in august, my aunt died of brain cancer and an uncle died of colon cancer. Each one of them including myself fought with everything they had. One aunt died of breast cancer after having it for 35 years and she suffered very little. The other aunts died of other causes not related to their breast cancer. I cant imagine how my life wouldve been if they hadnt chose to live and live well. I'm so happy to have had them in my life to show me how its done. They have left a wonderful legacy.

Well I just wanted to tell you these things so you see where my feelings come from. You do what makes you feel at ease with your situation. I pray you find peace in your choices. Hugs, Mazy

Oh my!  Where to begin.  First to Konakat (Elizabeth)...honey, you been through so much. You are my inspiration.  Your sense of humor stays with you no matter what even if you don't feel humorous.  You are one strong gal and my favourite Canadian!

When I was diagnosed with this disease, I, at first, was not so scared.  Funny, huh?  I found the big lump 9 months after my mammo.  Went and had things "checked" out and was sent to a surgeon.  I go to Duke for my treatments.  When I became scared was when my sweet, little, young onc started talking about dandelions and how we put weed killer on them, they pop up somewhere else, we put more weed killer on them, and on and on.  My youngest daughter said she wanted to say, ENOUGH about the dandelions!  Then we looked at the CT scan that the surgeon ordered.  Oh, the surgeon told me before any tests that he was 90% sure it was cancer...I still wasn't scared.  Really, it's the truth...I mean..it's only breast cancer.  Anyway, when we look at the CT scan on his computer he said there was a spot on my liver and adrenal gland.  I GOT SCARED THEN!  I had to go back for a PET/CT scan.  I laid in that contraption listening to Reba McIntyre (why did I pick her sad songs) and kept myself from crying.  I knew I couldn't move and wipe away my tears.  I was thinking...This happens to other people..not to me.  Oh, you bet!  I was feeling pretty sorry for myself.

On the way home that day guess what came on the darned radio!  Live Like You are Dying!  I started crying...husband turned down the radio.  When the song got to where they were looking at the CT scan it hit home.  I got ahead of myself up there...This was before the PET/CT scan.

Fast forward...the scan was clean.  I about jumped up and hugged my little onc.  Anyway, we made our plans.  I didn't go anywhere near a computer to look up anything about my disease...no where.  So, after many months of chemo (I also did six months of Xeloda), mastectomy, radiation..yes I had rads even though I had a mast because I had positive nodes....I was still alive!

I have now been diagnosed with bone mets to one vertebra.  Well, I say that now.  We'll find out with the next scan/s.  Anyway, it was found accidentally.  I was complaining to my once AGAIN about my LE arm.  She wanted to do a CT scan to make sure nothing was wrong...then she decided to do a CT scan and bone scan.  Well, surprise, surprise!  Nothing wrong under, around, beneath, on top, etc., with the arm.  It was a spot on my spine..had a biopsy to confirm it...still wasn't jumping with fear.  For one thing..I choose to sort of put my head in the sand.  Now I'm on Aromasin...changed from Arimidex.

No, Pompeed.  There are no guarantees.  And if my mets have spread I'm sure my not being so scared will be turned into terrified.  However, I have met so many wonderful, brave women on this site.  We've lost many wonderful women.  I will never say that I'm glad I got breast cancer..that I learned this or that from it.  I will say that I have met some of the sweetest women I iknow.  And, yes, we do get irritated with each other, but when someone is hurting, we'll be there for them AND YOU!

You are in a very bad place MENTALLY right now.  Do you have support around you?  Have you taken anyone to the doctor/s with you?

Losing a breast or breasts to me is not the end of the world.  Of course I was 58 when I got this crap and I didn't have reconstruction.  I didn't want to take the chance of infections and I didn't want to be laid up in bed in horrible pain.  You see, I'm really a chicken.

You will have to make your own decision/s.  I believe you may have been reading too much.  Have you visited the Alternative thread?

I would like to share something sweet and inspiring with you. 

Our employees put together this video to generate breast cancer awareness throughout our hospital system. We had a ton of fun putting this together and hope it inspires others to join in the cause....Providence St. Vincent Medical Center, Portland, Oregon.

http://www.youtube.com/watch?v=OEdVfyt-mLw  

If these people in the above YouTube was willing to act silly for our cause, I say God Bless'em!  Even got some "white coats" dancing.

We have two choices, medically and emotionally....Give up or fight like hell!  Lance Armstrong  

And one more because I love it.

Cancer Crusade Survivor Movie

http://www.youtube.com/watch?v=TWGqETd6oxk

Shirley, great video!!

Pompeed, First of all id like to say,that any one here is welcome, weather we talk about breast cancer or what ever, we all vent at times and we laugh too, but what you are doing is completly different, you didnt come here for advice or ask questions, or even support, you came to argue, these woman as well as myself  took you in and tryed to help, but you kept coming back with an argument on how this was all a waste of your time and ours, how do you think it makes us feel when we are all fighting here to stay alive and you come along and tell us what bull this is, a crap shoot, if you want advie, fine we will give it too you, if you need hugs, we are here, if you want to vent thats great, but please dont come here to tell us we are wrong, if you change your mind and need our help we will still be here to support you!!! Im wondering what is it you wanted from us??

I agree with you , Im 5 years stage 4 and my quality of life is OK. Im so grateful to still be around watching mt 13 year old daughter grow and hope to see her with her own children. I say I will try any treatment you have just to see that.

Guys, I don't think Pompeed is purposefully trying to piss anyone off or hurt anyone...I just sense that she is extremely TIRED.  I would bet money that every single woman in this thread remembers that feeling of being so tired of the whole thing...the surgery decisions, trying to figure out what the medical folks are telling you, the treatment decisions and possible repercussions, dealing with family, coworkers, the overwhemling  fear of it all, and you just want to throw in the towel, for real.  If you haven't felt that, you are extremely blessed.  Real depression is when you see no change, no hope, no light, no nothing.  Just more of the same.  I'm very grateful to be climbing out of the depression pit.  Because it sucks like a Sears shop vac.  It is overwhelming, dark and you are totally alone in it. 

I also think alot of it has to do with personalities.  I just don't deal well with the perky, pink, 'everything is going to be wonderful' positivity that some BC folks put out there.  It actually makes me want to hurl.  But alot of that has to do with me...there's nothing wrong with it, but I'm just not wired that way.  I try not to be critical of it, because it works for a lot of people.  I do better with humor and Monty Python, personally.

Konakat, I always love your posts.  You always say something that cracks me up!

Pompeed, I hope you get some peace. 

We can all think what we want, but when someone comes on here and berates those who are sympathetic to her, listen to her and try to help her there is a problem. It is insulting to those who do everything they can to survive, and see their children etc grow up to have those type of attitudes thrown at them. If the person had been on the forum for a while and was having a really difficult time and feeling dissalutioned that is totally fine and I would be sympathetic. When someone comes out of nowhere and starts in like this, I see big red flags. I have to question the motivation of the person.

I see Pompeed's point and tend to agree with some of what she has said.  When I hear about 80-something year old women being led to chemo for breast cancer, I want to scream out loud how ridiculous that is, in my opinion.  And it happens.  Because of fear of malpractice suits, doctors tend to recommend"overtreatment" for pretty much everything.

That said, we are "free" to make our own decision.  I have a very dear friend, two times breast cancer survivor, who thought I was absolutely nutzy for not agreeing to do chemo.  My IDC is barely ER+, my Oncotype DX score was 51 and my chance of distant recurrence is about 30%.  But the chance of neuropathy was up to 70% and I am diabetic.  I found the risk of permanent side effects too high for me to tolerate.  I am focusing on the fact that there is a 70% chance I will NOT have a distant recurrence.  My friend, who had lumpectomy and rads the first time, mastectomy and chemo the second time, is now battling for the third time (after 12 years of remission) and having another  mastectomy on Monday.  Chemo doesn't ensure anything.  She is also the picture of clean, healthy living (a perfect size 4 who works out at least 5 times a week).  That didn't ensure anything, either.  It does ensure that she is strong and healthy and increases her chances of fighting off this third occurrence.

So my suggestion to Pompeed is this:  do your homework, research treatment options, decide what YOU can live with, then take that route.  Have faith in your decisions, then get on with your life. 

I was diagnosed in mid-June, had a lumpectomy on 7/21 and finished Mammosite (5 day) rads on 8/4 and that was the end of it, other than taking Femara.  I decided to give Femara a try, knowing that I could stop taking it if the side effects were more than I could handle.  So far, so good and it's been more than 2 months.  I have moved on with my life.  I am not sick, in pain, or otherwise debilitated. No one could look at me and recognize me as a "cancer patient, I am the "picture" of health.   I am seeing my breast surgeon and oncologist in "follow-up mode" so my life doesn't revolve around doctor visits. 

All the decisions were mine to make, and all the consequences are mine to live with.  The same is true for everyone else going through this.  And it's not for anyone else to call a decision "wrong" because they chose a different path.  We are all seeking the same outcome - being rid of breast cancer for the rest of our lives.

Michelle

Forgive me if I mised something, because after the first posts by Pompeed (which I read in a kind of "flag waving" way i.e. I agreed with a lot of her thoughts) until I got to:

"I did not know that notes which only speak about how wonderful it is to have breast cancer are allowed. "

WTF? Am I missing yet another salient point? That statement got my knickers in a knot. Gosh, lets have a show of hands from all the people in BC.org who "only speak about how wonderful it is to have breast cancer". Screw that.

Pompeed, I wish you peace. You have been dealt some crappy cards in this game of life. Play them anyway you wish, after all, nothing you do is going to make a difference anyway....right? So you may as well have peace of mind and stop belaboring your well thought out and defended decision.

Pompeed .. I've been following this dialog .. and what hit me was that a year and a half ago when my dad was dying of esophageal cancer I wrote a post exactly like yours.  Much shorter, but the gist of it was the same.

Nobody wants to be cut up, burned up and poisoned by treatment.  The sad thing is, it's part of the cancer card.

I felt like you at different times since my diagnosis.  I wasn't angry that I got cancer ... I just happened to be that 1 in 8.  I was angry about my dad's cancer as he had symptoms for years and the whitecoats dismissed his complaints.  His death was not pretty.

I've been out of treatment almost 3 1/2 years.  I had a lumpectomy and radiation ... I declined the drugs (tamoxifen and arimidex) AMA.

I have gained weight ... I was thrown into instant menopause and I didn't watch what I ate and gained about 5 pounds a year.  My lumpectomy breast is still sore ... but the good one works just fine (I cared about this for sexual reasons). 

My life does not revolve around being a cancer patient or cancer survivor.  I'm just me plugging along everyday doing things I enjoy and the getting through the daily b.s. life throws at us.

I imagine Dr. Weiss thought there may be some benefit for you to check out this site.  I hope she was right and you can find some support and encouragement.

Hugs,

Bren