Scary News and I can't help

sheila123

My friend just died of BC and her prognosis was so much better than mine. I don't get it.

I have talked to a lot of women since I was diagnosed in 2000, and I try to coach and to help deal with treatment and prognosis and BC issues. I can't do this anymore. I feel so lame.

I was diagnosed with stage 3 BC and I had a mastecomy and chemo and radiation and I am fighting and I want to help others but I don't seem to be able to make any difference. Women with less advanced BC die and I don't understand.

How is it that women with a smaller tumour and a less aggressive cancer die while I am still ok?

ravdeb

Sheila..

I'm sorry that you got this bad news.

This bc is a tricky thing. There are probably a million answers to that question topped with a million questions as well.

My take on it is this...
1) If diagnosed with DCIS, there is always the possibility that there was some invasive cancer, very tiny and not caught on mammogram or MRI or anything else, and maybe that person didn't get chemo. And anyway..chemo doesn't work for everybody.

2) If diagnosed with an invasive type... my take on that is the same..some of it may not have been caught and some women in early stage don't do chemo.

3) the other thing is that even if the nodes were clear, that dang tiny cancer cell could have snuck out, unnoticed, into the blood stream...

And of course I'm sure there are a million other reasons but that's how I see it. I don't believe it makes a whole lot of difference what stage you are originally. I've seen this on the boards so many times...very scary but we need to just live with all of this. We need to enjoy while we are feeling good and have no signs of any more cancer, and just live life.

That's my take on the subject.

mkl48

Hi,
These boards don't represent the entire universe of BC patients.The statistics do hold some significant relationship to outcomes in large groups of women, not single or small annecdotal reports.Just look at our own statistic- 87% of women will not get invasive cancer throughout their lives. Many of these have risk factors, eat poorly, are overwight, smoke and don't exercise etc.You have posed the most demanding question. I think this is why so many of us are interested in alternative, supplemental medicine. Something must make the difference-sure as ****wish we knew why. Beth

ravdeb

Well, first of all, I read that 80% of women with bc have no history of cancer. You talked about the risk of overweight, smoking, etc..

I was diagnosed with IDC, am not overweight, no BRACA, no family history, no smoking, low fat diet, etc, etc etc..and I've been exerising for years. My IDC was also hormone neg..I didn't even get it because of having an early period and late menopause.

I don't believe in the statistics because 80% of lumps found are benign and I didn't fit into that majority..didn't fit into any of the statistics.

No..these boards don't represent the entire universe of BC patients but then no study does either. However, there is a wide variety of types of bc on the boards and all of the stages and grades, so I think we have some good info to go on.

It is a tough question. We don't know. They are still trying to find the causes and the cures. Wish they'd find them.

I know so many women who have lived healthy lives, went for alternative and complementary medicine, and still were diagnosed with cancer..some on these boards and some in my personal life.

It's very frustrating. There are no answers....

I agree Beth..wish we knew why.

mkl48

You misunderstood. I was referring to the fact that most women who have risk factors don't get BC. Most smokers don not get lung cancer. The question goes both ways. Why do the 80% with no risk factors develop it and the high percentage with them not? AT least with heart disease one can impact the probability of developing it and reduce the risk of dying.

roseg

Everybody is different.

I think the risk factors for breast cancer are poorly understood.

Don't feel bad about living while your friend passed on. I don't think that's what she would want.

Your experience shows why it is important for EVERY woman to be treated and to do what she can. You can carry that message. Breast cancer is a rotten disease. You can be grateful that you are alive. It is your calling to help others with the disease.

Grieve for your friend, but keep on because she would want you to.

LiveForToday

Sheila, so very sorry about your friend. I wish we had all the answers to all the questions. Some where on this site someone said it is all just a crap shoot and I am beginning to believe it. None of this is fair but you may be here for a reason and to make a difference...I bet she would want you to continue to live and help others with your experiences. Continue to fight the good fight!!

huggs, Sherry

sheila123

Thank you for your responses. No one else would understand the things we go through.
I am soooo happy to be alive and doing well, make no mistake about that. I don't even feel guilty. I just don't get it and it makes me feel bad that I reassured someone that they will be okay, based on the fact that my cancer was diagnosed as so much more advanced and I was okay.

I definitely had more aggressive treatment than my friend. I was given alternatives but my alternatives were a choice between very aggressive treatment and dying so it was very easy for me. She had a lumpectomy and radiation and that was what her Oncologist recommended. I wasn't there, I don't know if she had choices or could have gone for the gusto, I don't even know if it would have changed anything if she had been more aggresive.

It is a crap shoot. I have every treatment that was presented as an option. I didn't care what part they took off or what I have to go through, I just want to not die.

Maybe I am alive because of the aggressive treament or maybe I am alive because I laugh my ass off ten times a day, and maybe BC is just not understood.

My cause now is to raise money for BC research, There is too much unknown and I want to do whatever I can to fix things. I want a different world for my daughter. Nothing else makes sense to me.

Anonymous

Post deleted by bco-administrato

ravdeb

Returned to topic...

It's interesting that you say that you feel badly because you :
"reassured someone that they will be okay, based on the fact that my cancer was diagnosed as so much more advanced and I was okay".

I find it interesting because I have heard that from my oncologists repeatedly..I'm in early stage, don't worry, statistics show....

That is all we can do Sheila...encourage. Without that, there is no hope and each of us needs hope.

It's a crap shoot as they say, and your new cause for raising money to find solutions, is where it ought to be right now. Good luck and be well.

Hope_M

I've been reading these boards now almost every day for about three years. If nothing else, you learn that the behavior "pattern" of this disease is pretty unpredictable. Women with small lumps progress and die; women with huge tumors live on.

So the statistics hold only for groups and do not speak to us as individuals.

I once reassured my best friend that her seemingly irrational worry about her pregnancy was for nothing. Later her baby was born with a terminal birth defect and died within days. I felt so bad. I was a know-it-all and I think that I learned a good lesson.

But, it is okay to be human. You didn't have any ill intent in reassuring your friend. I'm so sorry that she is gone and I hope that you will begin to heal soon.

Good luck,
Hope M.

linny

Sheila, I am also a Torontonian - which part of the city are you in.

I feel like everyone else, it is totally a "crap shoot" - I tried to educate myself as much as possible when I was diagnosed - the one thing I came away with from all the books I read - there are many different outcomes, and the medical profession simply does not know what works and what does not. Many many patients have no benefit at all from chemo, and others do - the doctors told me they do not really know ahead of time. I had two positive lymph nodes, when I was going for chemo last year, the nurses in the chemo room would say to me "oh, that's good, not so many nodes" however I know this is not the case, any positive nodes puts the patient into a whole different survival category. I find the living with uncertainty the most difficult part of all this, and I do not get the impression from any doctor that they know the answers - basically there are none. On a recent follow up, the oncologist said I am fine - jokingly, I said "will you sign for that on the dotted line" - he smiled and said No.

People who have not had cancer have said to me "put it in the back of your mind" - not possible, but we do go on with our lives and I am grateful to feel well.

Linda

roseg

Quote:

---

I once reassured my best friend that her seemingly irrational worry about her pregnancy was for nothing. Later her baby was born with a terminal birth defect and died within days. I felt so bad. I was a know-it-all and I think that I learned a good lesson.

---

Unless you have an MD after your name, and not even then, you can't predict the future or pretend you're an expert. BUT there isn't any reason to add fuel to someone elses worry. Most of us can do that for ourselves just fine!

Hope is right that the disease is unpredictable, and things take courses that don't seem right.

Nobody deserves to be made fearful. I'm always in favor of presenting an optimistic view. Today is the most important day. If you can reach out and help someone feel better today then you've done the best you can.

RoundTwoinCA

Sheila,

I'm so sorry to hear about your friend. You shouldn't feel bad - you were being supportive and your knowledge told you she did have a better prognosis. There's nothing wrong with that.

I'm a crap shoot believer. I think we need to remember that this disease is a mutation at the cellular molecular level. For all of the research and all that we and the scientists know, there is 10 or 100 times more that we do not know about it. This is why our true prognoses are not fully predictable. We can do what we can to take care of our bodies and take our treatment and hope that we will win this battle - if not completely, long enough until they find a cure.

Unfortunately, we will lose some of our sisters - it's always unfair and usually unexpected.

I think that's why I tell everyone who's interested in hearing anything about my cancer - to raise awareness. I'm surprised how little people know about cancer - much less breast cancer.

I hate this disease...

Fitztwins

Shelia,

If there is anything that I have learned on this so called journey is that sh*t happens. Period. Since I was diagnosed with very advance BC (IIIC) I feel I am a walking time bomb. During that that time I have know many who had a better prognosis succumb to mets or worse. I have seen people die of other stuff too. Wacky heart aliments, strokes, etc...

I too knew a woman who had a better prognosis. She did not choose agressive treatment. She is now in hospice.

You can help. You made a difference. I am making a difference. Hopefully in our lifetimes we will make breast cancer a true chronic illness that can be controlled for years.

As to all the stats and studies? Unless it is a controlled group I don't pay attention. I have met too many that followed the right path at still got BC. I see too many women who are doing all the wrong things and are fine.

I hate this disease too.

Janis

aliciamaris

Janis -

the dear friend who helped me through the early part of my diagnosis/treatment was diagnosed at IIIC, no clean margins, etc. That was nearly 13 years ago. And she's still dancing with NED.

hugs
Alicia

Fitztwins

Alicia, thank you!! I will be dancing the jig on my 13 year anniversary!

RoundTwoinCA

Yes Janis - you will be! The treatments are so much better today than 13 years ago too!!

jan125

ok, thanks for the hope on Thanksgiving, that is the best gift, hope. If someone can make it for 13 years at IIIC, with the treatments that were available then, I can do stage 4 with the treatments available now!

Let's just be happy and thankful for all the research and advancements. God bless whoever helped to develop them!!

Anonymous

aliciamaris

Janis and all of you - I plan to be dancing right next to you!

Happy Thanksgiving, all. I have so much to be thankful for, and at the top of my list are the women on this board.

blessings
Alicia

CyberCat-2006Oct09

I don't fit any of the profiles for breast cancer either.

I know a lady who had bc in both breasts - very large multi tumors -- all lymphs removed had cancer cells in them. That was 25 years ago and she is alive and well.

If one cancer cell sneaks out of the primary area and survives the chemo -- the bc will be back. It's as simple as that.

jan125

Well, nothing is that simple. There are ways to prevent reoccurance such as herceptin and hormonal treatments. I have been told by my onc. that there are women with metastatic breast cancer who do keep it away. If life was that simple things would be much easier for all of us!

CyberCat-2006Oct09

well, then if the escaped cancer cell escapes death via chemo,
herceptin,
and/or homonal treatments,
then it will be back.
And you have metastatic breast cancer - it's as simple as that.
otherwise
there would be no mets

vpiazza

people look at risk factors and statistics and all those things, searching for an explanation as to why they got cancer, or why they won't get it, or why they'll likely survive if they do get it, etc.

the universe is not such an ordered place, and things don't happen based on statistics or suppositions.

as far as helping - if you talk to them, support them and let them know you care, you are helping them. that is what it is all about. we cannot cure each other, or stave off this disease, or even offer up a "rational" explanation to feed our need for order and control, but we can love each other and show each other how to live, and how to die.

RoundTwoinCA

I think I am tired of the notion that there really is a "breast cancer profile" - there isn't. These are just factors that some statistics follow. I remember when I was diagnosed (I also had NO risk factors) - my onc (who was a pioneer in bc treatment) said "You're thinking - why me? - but why not you? Breast cancer is an equal opportunity disease - you don't even have to be a woman." He then brought in a woman who had an "identical" diagnosis as mine 35 years prior - and she was still in remission. Here I am 12 years later with a recurrence - same cancer, same treatment, same onc.

I seem to recall a thread with a link to a study of early stage bc women who had bc stem cells in their bone marrow. It also went on to say that recurrence may be caused by these stem cells - not errant cells that escaped chemo or hormone therapy.

I realize this is very discomforting but it is one possible explanation for why two people with "identical" diagnoses can have such different outcome.

I agree with vpiazza

Quote:

---

...we cannot cure each other, stave off this disease, or even offer up a "rational" explanation to feed our need for order and control, but we can love each other and show each other how to live, and how to die.

---

GreenHeron

Dont' think when you comfort a friend, or use the logic of caught early, etc. that you are guarenteeing anything. The person you say it to does not take it that way. What you are giving out, so beautifully Shiela and others, is HOPE. We all look for the logic that will give us our personal ultimate distinction for good prognosis...and that is what we give eachother...hope. Don't ever feel bad...you helped to find a way for hope, we all know that no one can promise anything, and that saving, dying, living and surviving are all out of our hands.

Flashdif

sheila123

Thank-you all for your responses. I know that you are right in that all I can provide is hope.

I felt great comfort hearing survivor stories when I was diagnosed and I still do. We have to believe that we can beat this and I am still in that space and will always be.

I am positive and yet very aware that I am walking a slippery slope. Every day without bad news is a wonderful day!!

jetj

Sheila,
Please don't believe that you don't make a difference because supporting ladies through their diagnosis and treatment, you do make a heck of a difference. We have no control over the BC, but gee helping ladies cope with it and deal with it is so important. I'm sure you made a difference in your friend's quality of life by just being there.

I think what you do is wonderful but it does leave you open to the emotions, you are now coping with.

A wonderful lady from Ontario in Canada gave me support when I needed it, here in Australia and it meant so much to me.
I wish you well.
Janette

Anonymous

First, let me say I'm sorry for your loss. I was told by my onco that I have a favorable tumor, being TUBULAR CA. However, I was also told that I have DCIS and ADH in the same breast lumpectomy path report. That increases my chances for recurrence. For some reason that we dont always know, slower less aggressive tumors can kill some, while others with very agressive tumors, like my husbands can live a long time.

My sister and my best friend have stage IV for over 7 yrs. Mets to the spine, brain, bone. They are still HERE. Dont understand it, but the human body is so very complex. No two people are the same. I never compare diagnosis and I have learned that having co-morbid conditions can contribute also..

I wish you peace and recovery... God Bless.

sschmidt

My first surgeon said "why are you crying? You should be happy it is stage 1." After sentinal node biopsy my new surgeon said..."I couldn't be more schocked if a shooter jumped up." My nodes were positive.

So...I had aggressive chemo due to the nodes and all thought I would not have any chemo due to the tiny size <1cm. Perhaps that saved my life. It is a crap shoot for sure.
Who is rolling the dice? Now that is a question.