What Breast Cancer is, and is not! (a response to Komen)

Anonymous

medigal - think you're describing a stereotactic biopsy- which also made drilling noises in my boob that sounded like a roto-rooter drill.  AWFUL - the whole blinking process is hideous - and I'm grateful for all of us, we're still here to talk about it.

I still cry, and laugh, when I think of Molly Ivins, describing her almost 9+ years of IBC in 2002:

"Having breast cancer is massive amounts of no fun. First they mutilate you; then they poison you; then they burn you. I have been on blind dates better than that."                          May she rest in Peace.

Medigal

Sunflowers:  Yes, it was that!  A stereotactic biopsy but what made it so hard on me was I have a spinal fusion and can't lie on my stomach without pain and they told me I just "had to" and that's when they later both left me alone on the table in the room and I was terrified the pain in my back was going to make me move.  They should have left someone in the room with me due to my problem but it seems they expect bc patients to be super strong!  Not a happy experience but thank goodness the tests did not show more problems so that made me happy! 

BTW, I have made up my mine I can never have that type of biopsy again.  "They" told me it was easier than being cut the regular way but not for me it wasn't!

Anonymous

OUCH - Medigal - OUCH - boy, do I empasize - I had back surgery years ago - and I insisted I have a pillow under my stomach and under my ankles - I was lucky enuf to have such big boobs - there was no problem!!  But, jeez, that was a rotten procedure - more uncomfortable for me, probably for the same reason for you - of almost anything I had to do. I remember taking something like Valium or some kind of a relaxer before the procedure too.  My cancer was in several places - so the whole procedure took more than expected - YUCK.

Glad we're both still here - and doing well.

Denise2730

I am more afraid of chemo than I am the cancer. I know of nobody, I mean nobody who was cured after chemo so I refused it. Some people have told me I will regret it in the future WHEN the cancer comes back. I won't regret my choice even IF the cancer comes back. To me, it's not logical to kill our immune system when we need it most.

chef127

chilurv,

I'm with you. Yes, the chemo seems more dangerous to our bodies than the BC, but it does help many woman survive. I have carefully analized my own CA situation, even tho I am not qualified to make that assesment and opted out of chemo. My oncotype is in the greyzone but I chose to decline. How much longer do i have anyway. QOL is what i am choosing. For me. its the best way.

Lifestyle is critical IMO. Diet changes, supplements, excersize, etc. IT IS A CRAP SHOOT. Like life itself.

Fearless_One

Chiluvr, I totally respect your opinion.   I did have chemo, but I was REALLY on the fence about it for the reasons you state.

Anonymous

My experience - chemotherapy ( AC dose dense) was not nearly as bad as I feared.  Not fun, but done in a few months, that was 5 years ago, and I'd make the same choice again.  Grade 3 IDC, node negative, but still wanted to do all I could in a timely way, to stay on a long, long journey with NED.

Claire_in_Seattle

I felt sorry for Linda because she came through this experience feeling "maimed for life".  I don't feel that way.

True, I have a sizeable lumpectomy scar, and very minor symptoms from treatment, but these in no way slow me down.  I am loving my new hair which I wear in a way I never dared to prior to treatment.  I look fab and have a ton of energy.

So I in no way feel that she represents to me "what breast cancer looks like".  Or at least I don't believe it has to look like that.  For example, I didn't have any burning at all with radiation, and my port scar is barely visible.

Which gets me to Medigal's point.  I understand the message Linda was sending, and I agree with it.  Where I have a problem is that she is so traumatized by her experience.  A lot of us aren't. 

I understand that I was very fortunate to land on my feet following treatment with no mishaps in the journey.  I am so thankful to be here.  I try to encourage those just starting, and agree with Sunflowers that AC was in no way as horrible as I had imagined.  Nor was any other part of this journey.

That is the message I try to send......that life really can be better than ever.  Not that it will suck big time from here on. That one was never an option. - Claire

Medigal

Claire:  Your post is so true about the old saying if you get "lemons".  You seem to have made a lot of great "lemonade" with yours!  Best to you!

LtotheK

This has turned into a cool thread.

chiluvr1228, for me, the issue is:  they don't know what causes cancer precisely.  To talk about "cures" or not seems like putting the cart in front of the horse.  However, the statistics are clear:  chemotherapy slows the progression of later stage cancers, and can make patients NED for much longer than without.  The statistics are also clear:  standard BC treatment is effective in prolonging life overall (when warranted, of course--there is lots of fine detail about who should and shouldn't have chemo).

Also to be clear, the immune system is not what causes or cures cancer per se.  Medical science just hasn't figured it out that clearly.  Our immune systems can be perfect, and our bodies are unable to distinguish the cancer cells because of stress, environment, genetics, etc. etc. etc. 

These are tough personal decisions, but none of us can know for sure who was or wasn't cured of this disease, other than to die of something else.  I can say this:  I'm glad I did at least some of my treatment.  Tamoxifen alone is lowering my risk of coming back by nearly 10% over 10 years.

I am a 41 year old woman in menopause. You better believe I've been maimed.  I don't define myself this way, but I have been transformed in an extremely complicated and difficult way.  People need to understand this more clearly.

I think all voices are important.  Claire has been an inspiration to me.  But my journey is very different.

Pompeed

No one stands in anyone's shoes but their own. 

            It's nice that some are not traumatized by their experience. 

           That is not true of others, however, and the experience of those others is just as legitimate, valid and in need of public airing.  For some it really is not a bed of roses at all and that is a reality which should not be suppressed.

Wabbit

I too loved that video ... brave lady! 

I did not see Linda as whining about being maimed at all.  What I saw was a woman who was angry that the reality of the breast cancer experience was being denied and covered over with a sea of pink fluffy 'just find it early and it's no big deal' messages. 

I had a unilateral mastectomy, can still see my port scar, had chemo but didn't need radiation.  Our experiences can be very different depending on what types of treatment we had.  And every time I see one of those 'seas of pink' at the breast cancer walks I wonder if anybody but us knows that eventually a great many of those survivors will find themselves Stage IV.  I don't think so ... thus we hear women here upset when they get told they have the 'good cancer' and it's no big deal. 

Linda obviously felt the need to get more of the truth out there and I commend her for it. 

Pompeed

            For the first time in my life -- and I chalk it up to the self-operated and self-organized fiasco Komen put before the public last week -- I have just seen a commercial on the tube for a "pink" run in the Philly area. 

            One would think from all of the fallerall and hoopla and cheers and shouts of glee that getting a diagnosis of breast cancer is a condition one looks forward to and yearns for.  So one can join in all of the fun and be one of the girls.

            Kudos to Linda.  It ain't the little minor medical problem which some crack it up to be. Her experience is just as valid as anyone else's.

            

Layla2525

Bravo Linda....That was a great video and we need to remember our sisters in this disease which she brought out that do not have access to insurance and medical care. Some live in rural areas,some have lost their jobs with insurance. I was asked to put down my 15% that the insur pays 85%,I had to put that down first,then I have a patient fee for the hospital, plus my co pay started over in Jan and I am swimming in medical bills from all the test and biopsies..I had to get a loan to make an over $2000 down payment just to get my surgery!!! I did not find it scary...what I found scary was my aunts chest in the 1960s as a little girl when she showed my mom what happened with the radical Halsted mastectomy and I vowed that if I ever got the bc I would shoot myself before I would undergo such barbaric treatment. Now I have the disease but things have progressed I caught it early...have a SSm bmx with TE and get implants. Maybe get oral chemo pill! Maybe even grow back my own breasts someday with friggin stem cells! But bc is a beast and I applaud Linda as General in this war.  You go girl!  i say good health live long and strong to each and every one of us who have stared down the grim reaper when all we wanted to really do is be soccer moms or girlfriends or good employees or someones BFF to go shopping with or someone's wife...Somebody teach me to play poker with bc and win.  I think Linda is getting a handle on that.

Claire_in_Seattle

My own belief is that there are definable patterns of how patients react post active treatment (called "segments" in market research). That is, although every experience is different, reactions fall into definable categories with common characteristics.  So Linda would represent one segment, and I would represent another.

I looked for this research a couple of years ago, as I was nearing the end of chemo, but couldn't find anything on this topic.  I believe it would be extremely helpful in knowing how to treat patients post active treatment.  It would have been extremely helpful to me too, in terms of knowing what to expect.

As an aside, I think that one of the reasons I feel as I do is that of the four girls in my family, one was born with congenital issues, and died at 14.  One other is bipolar.  In the scheme of things, I think I got off easy.  No, not a minor incident for me, but trivial compared to my two sisters.

Pompeed

One of the easiest things to find in the world is someone whose situation is less appealing than one's own.  In that we are all fortunate. 

LtotheK

Pompeed, while true, this really goes against my ethics.  My mother was so beautiful when she described a response to a friend's "well, at least your daughter isn't in THAT group" (meaning Stage IV).  My mother's response was that I wasn't, but someone else's daugher was, and so she considered that cold comfort.

We are in one way or another in this together.  And I've felt very strongly that the suffering and neglect of the Stage IV BC community is a bane on all of us.  You can't pinkwash death, and there's not too much else "worse" than being told your life will end, probably soon.

leggo

LtotheK, please give your mother a kiss for me.

lassie11

I started to watch that video and when Linda showed her port scar, I turned it off.

It doesn't help me nor is it exactly the same as the treatment I had. It's hard to imagine how it could help someone who hasn't been there. In some way, showing your scars might be useful, I just don't want to see it. There's enough to see just looking in the mirror.

I didn't watch childbirth movies before having children either. Everyone's situation is different.

Pompeed

No one has "been there" or can be there until they actually are "there."  What one's own situation actually will be is a complete unknown.  There's speculation based on statistics and known facts.  But what anyone's situation will be in reality any day after finding out that one's entire life has been turned upside down and inside out is an unknown for everyone.  No one's actual experience will be exactly like someone else's. 

Marple

Scars don't bother me.  Breast cancer does.  Good job Linda.

peggy_j

WhiteRabbit wrote:
I too loved that video ... brave lady!
I did not see Linda as whining about being maimed at all. What I saw was a woman who was angry that the reality of the breast cancer experience was being denied and covered over with a sea of pink fluffy 'just find it early and it's no big deal' messages.

I agree.  Thanks for posting OP!  I'm also in Barbara Ehrenreich's camp that it gets tiring to hear the message that we should all stay positive and have a good attitude all the time. Yes, there are times we can be positive but there also times when we feel sad or angry or discouraged, etc (just like the rest of our lives.)  Several times I heard Linda say "this is what cancer was for me." She makes no claims that she's speaking for everyone.

chiluvr1228, I know many people who are long-term survivors who had chemo: a friend who is 12+ yr cancer survivor who had chemo, among other Tx (she was stage 3,  ~7-8 lymph nodes etc); another woman who is 16-17 yr survivor, also with lymph nodes, etc. Just an FYI.