Not Buying Into It

Pompeed

Right here, Nancy.

Have kept away from reading on this board for a few weeks while I tried to work out what to do (if anything at all) since all of the professionals have different opinions.

Just happened to toddle back here a moment ago and found your note.  From all of what I have read and listened to from others, the odds are that chemo or rads or both are going to be a trip through hell.  I'm skipping both.  For the simple reason that six months of life will be spent being sick and miserable and risking all sorts of side effects which may be permanent and then another six months trying to get over the miseries.  Instead of agreeing to be sick, I'm going to be was well as I can possibly be.  Proper diet, regular exercise, proper weight and all of the rest of the things which got me to age I am before the cancer struck.  I'm in far better shape -- and always have been -- than most of the people I know and I am vigilant about my health and health care.  Which is how the cancer got caught as early as it did

If my immune system could keep the damn cells under control this long, they can keep doing it awhile longer.  If I have a recurrence -- and I realize that if that happens, I will already have symptoms and the cancer will be harder to control -- and chemo and all of the hell which comes with it is what has to be done then, I'll face it then. 

I will not put my present state of good health into a state of poor health for the next year in the hopes that my chances of survival ten years from now will improve by doing so when that benefit is unknown.

From what I can tell from the test results, no chemo and hormone therapy is 13 / 87 in a hundred after ten years.   Chemo and hormone therapy is 9 / 91 in a hundred in ten years.  That's a change of just four women after ten years.  And that's just a POSSIBILITY.  I'm not going to deliberately put myself into a state of being UNHEALTHY for the rest of this year for the merest possibility of a very remote benefit a decade from now. 

 And, Nancy, I think you should be mad as hell. For the last six months, a whole lot of stupid stuff was done to me and I have been mad as well.  The second MRI day was just a jolly time -- NOT!!!

I think it's good to get up on one's hind legs and openly say so.  Sending some anger out into the air is good for one's insides.

lago

Pompeed your decision was much tougher than mine. I knew that not doing chemo/herceptin would be rather reckless on my part. The odds of doing both chemo and hormone therapy more than double my odds of being alive and NED in 10 years (from 40/100 to 84/100). My last chemo (#6) is Tuesday.

I can't say I'm looking forward to the 1 week that follow but I'll get through it. Right now the worst part is my nails on my hands (and some toes). Many have lifted, hurt a little and have actually lost two toenails. Rare SE of taxotere but I keep falling into that 30-5% chance statistic.

Overall chemo wasn't too bad especially the first 3 rounds. If I knew then what I know now I'd still do chemo but of course I don't want to do it again

otter

I have decided that the best we can hope for is to be able to look back on our decisions and still think, as time passes, that we made the right decisions.

Failing that, I guess we need to trust that our decisions were the right ones for us at the time we made them.

Nobody I know has a crystal ball.  Worry and regret are difficult emotions to suppress, but they don't do anyone a speck of good.

Hi, Pompeed.  I hope you've healed (physically, at least). FWIW, I probably would have decided to skip chemo if I'd had your same stats.  For me, an Oncotype DX score of 18 was the no/maybe cutoff -- definitely no chemo for a score of 18 or less. Your score fell within my gray zone.  You had lots of reasons for tipping the balance in the direction you did.

otter

allalone

I was surprised to read that Dr. Marisa Weiss, a radiation oncologist, bypassed chemo and rads but accepted hormonal therapy for her early stage invasive bc after surgery. It reminds me of the study done on doctors asking whether they would follow their own advice. Anyway, I don't know her particular situation, or pre-existing health problems, and it's her choice - just like it is our choice - and I support her, like I do everyone who copes with this disease in whichever way they believe is right for them. Some people hit it with all the big guns from the start by choice or by necessity, others weigh up tx benefits vs the absolute and relative risks and proceed cautiously.

I think age, overall health and family status play a huge part in governing our decisions. If I were younger, had no other health risks and had a husband (to help me) and small children (who depend upon me) I would go for the big guns. Because I'm not in that situation I tend to agree with Pompeed that risking a present state of reasonable good health for unknown benefits in the future is a bit weird.

Pompeed

Here's my take, Nancy --

They dont' know what they dont' know.  Science is where it is and we're where we are relative to it.  Ten yeas ago things were much worse for women than they are today and ten years from now, they will be better than they are now.  Science marches on and everybody is "stuck" with what state science is in when they are in need of care.  It's always a crap shoot.

I don't know what the agenda is.  My breast surgeon goes with reasonable decisions from me given what's known.  She doesn't offer advice as to what she would do or what she thinks I should do.  She will get exercised about choices which she thinks, from the science, are too risky. 

Onco No.1 is a young MD without a lot of experience.  Her position: do everything possible because that's what gets one a "cure.  "We can cure you now.  We can't cure you later."  Well, told her that using the word cure doesn't make much sense since cancer is a biologic process of cell division going haywire just as we age and without considering any other possible cause such as exposure or genetics.  It's a fact: as everyone ages, cells get less and less vigorous and less and less able to divide correctly and without errors.  So if cancer is a "disease" and not just a normal process, saying one can be "cured" by therapy is nonsense.  The word "cure" puts an unwarranted expectation into the mind of the patient.  And were it true that we could all be "cured" with surgery and rads and chemo and god knows what all else, we would not be looking at statitstics about recurrence or new cancer down the road a decade.  No need for any such studies out ten years if we could all be "cured" at the time of diagnosis.  So I cut that word out of my discussion with her. 

Onco No. 2: Is my age with a history of BC herself.  Has treated thousands of patients over a career of 30+ years.  So she has a much better track record of knowing patients and therapy and results.  Her take: "Chemo is your choice.  I'm not pushing it one way or the other.  But you must do the hormone therapy because we know THAT will be beneficial for you.  And I want you to get some other tests done and get back to me about the chemo as your window is closing.  Go see my colleague and get her opinion about chemo.  She has a lot of experience." 

Onco No. 3: She and Onco No. 2 were fellows together at Fox Chase some years ago.  Her take: "We don't know whether it will help you or not.  We don't even know if the line between low risk and medium risk is in the right place.  You could be in the low group.  You could try it and if you can't stand it, then stop.  But the hormone therapy you really must do because we know it will HELP you.  We can address your concerns about the SE of the hormone therapy and manage those.  You must keep on top of your health other health problems and make sure you stay in good shape and get the other tests done to make sure we are not missing other risk factors."

So there's the most conservative approach: take the chemo even though it may not do you any good because it might do you some.  Or there's the middle approach: the chemo is your decision but the hormones are mandatory and so are the other tests to make sure you don't have other risks.  Or there's the middle/mixed approach: try it and see and quit if you must.  Meanwhile, do the rest of the things which are necessary to keep yourself in top shape and vigilant about your risks."

What's the agenda of these three MDs?  Got me!  I don't believe that Onco 2 and 3 are any less interested in my survival than Onco 1.  But their approach is different.

If the people who are treating you are not being nice and observant and respectful and all of the rest of the things a patient has a RIGHT to expect, make your displeasure known.  Get hold of the MD and the nursing super and so forth.  The hardest part of all of this crap: we have to be our own advocates.  When I was in hospital I told them I'd rather be thought a pain in the ass then be "liked" if getting what I needed by being a pain in the ass was more productive in that regard than being "liked." 

Be respectful as you wish to be respected.  But be very, very FIRM is all I can say and hope that comment is of some help. 

Pompeed

Allalone wrote:

"Some people hit it with all the big guns from the start by choice or by necessity, others weigh up tx benefits vs the absolute and relative risks and proceed cautiously."

This is the Black Hole of Calcutta.  We know with reasonable scientific certaintity from oncotype that the low risk people get no benefit from chemo. We know that high risk women get a significant benefit.

We dont' know what to do with the people in the middle.  And we aren't exactly sure where the middle is.  Like a lot of others, I seem to have gotten cancer (or, rather, found the cancer) too young.  If I had waited a couple of years until the study results come out for the middle group, I'd be better off.

The risk benefit analysis if a good means to sort things out in life.  But it requires one thing to work well: a knowledge of both the risks and the benefits.  All those of us in the Black Hole have is some conception of the risks because we know all of the horror stories of chemo.  What we don't know is what the benefit, if any, would be by going to hell and back.  And that assumes one can get back.  The stats on permanent side effects isn't reassuring.

If I take chemo and get really sick for six months of this year, it will take the next six months to get better.  But I will be a year older and it will certainly be harder, even without any permanent side effects from the chemo, to get back to the state of health and fitness I'm at now than it will be to preserve this state of health. 

The thirty some year olds may be able to bounce back more readily but for some of us, thirty something happened awhile ago.  Now it takes twice as long to get back into shape as it does to lose condition.  One day without exercise means two days to make that deficiency up.

If another cancer is found in my future, I'll figure out what to do then.  If I'm 85 years of age, I might be having surgery if surgery is an option.  But I won't be having chemo.  Who knows: I might drop dead from a heart attack within the next ten years and have no recurrence between then and now.

It's all a crap shoot. 

Pompeed

Lago wrote:

"The odds of doing both chemo and hormone therapy more than double my odds of being alive and NED in 10 years (from 40/100 to 84/100)."

This is a no-brainer.  Unless one is about 93 years of age.  Which you aren't.

You're on my Tuesday list of people to keep in mind.  I have to go to PT for my arm and every time I hit the ball, it signifies your chemo killing what it ought to kill.

Hang on, you're almost done. 

lago

Thanks Pompeed. I'll be thinking of you too.

Pompeed

Hi, Otter --

You don't know it but you've been a great help.

Thanks.

steelrose

Pompeed, my friend, is back in the saddle! Good to read your posts, and I hope that PT is helping the arm. I'm struggling with range of motion problems myself and this weird numbness still. My oncologist made an eleventh hour pitch for rads which I declined. Once on my spine last year was enough for me. That and four "procedures...," i.e. nightmare hospital stays, chemo, hormonals, early menopause... well, let's just say 2010 wasn't my year. Good news is that I'm supposedly "NED..." until my next scan at least!

I agree 100% about being FIRM with our health care providers. I had a bit of a meltdown after my liver ablation in Dec. and ended up walking out of the hospital (up a flight of stairs!) after the incompetent nurse didn't have my pain meds or discharge papers ready. Silly on my part but I had reached the saturation point.

Happy, Healthy 2011 to all!      

JanetinVirginia

It's nice this thread is continuing and on such a productive note.

Pompeed - glad you are doing well.

Nancy/Steelrose - I hear you.  The first surgeon I went to wanted me to do lumpectomy/rads.  I did not want radiation.  Because the cancer was on left side I also knew radiation field could affect heart (as well as lungs) I wanted mastectomy.  (The only place I would have considered was MSK because I had read they had designed a special table where the beam could be better controlled.)  He kept dismissing my concerns.  Besides the burn issue, I knew he was wrong about radiation in general because I had thyroid cancer many many years ago when I was 19.  Ever since, I've been told by cancer docs I was probably either exposed to concentrated radiation early (maybe even dental Xrays with defective equipment)  or there could be a genetic link and advised me to avoid radiation and also my children.  It was a fight every time I go to the dentist or took my kids.  Every few years I allowed it ,but only with a lead thyroid collar/shield.  I do that whenever I have any Xrays/scans - and they never offer one - you just have to know about it.  Anyway, found a breast surgeon at a NCI who agreed with me about mastectomy - and was good thing as it turned out multifocal that screenings had missed until the last MRI. 

Then I started Arimidex w/onc.  That lasted 2 days as I had immediate heart palpitations & pain.  He switched to Tamox even tho I'm post menop.  But said he didn't think the Arimidex had anything to do with it and said get it checked out with cardiologist even though I don't have high blood pressure or high cholesterol , my weight is within good BMI, normal EKG, etc.  That was November.  Then the San Antonio study came out in December that 26% women have heart SEs! That's how fast conventional wisdom can change.  So I printed that study and took to cardiologist who said it usually takes a month for new studies in other fields to get to the cardiology journals and he would look it up before next visit.  I'm also not taking full dose of Tamox because I've read in a couple of studies that low dose is just as effective and mitigates some of the more serious side effects. So I'm sort of a hybrid in terms of treatment - have one foot in conventional medicine & one foot in my own.  I guess my point is I;ve learned in a way you have to be your own doctor.  It's exhausting, frightening & ultimately a lonely personal journey no matter how much support you get.  Depending on each person's diagnosis, sometimes you have choices and sometimes you don't. 

Allalone - I have no idea, but my guess is that Dr. Weiss had no rads because she chose a mastectomy instead.

Lago - bless your heart that you're almost done w/chemo.  We started our journeys about same time.

Peace to all of you in your decisions.

worldwatcher

I'm glad to see this thread progressing and Pompeed back in the saddle, as it were.

I had my six-month mammogram and ultrasound Dec. 29, and they were clean. I have had the lump and partial breast radiation, but have refused chemo for many of the reasons posted here, primarily my age at 71.

I have spent six long months searching for an oncologist who is willing to listen to me and respect my wishes and finally feel I have found one.  He has been in practice for 35 years, and is a DO (osteopath) rather than an MD.  I have had very good luck with DOs for years and my PCP is one also. He also mentioned to me that he had heard there were to be some changes in the method used in grading the tumors in BC and seemed to question the IIb stage of mine.  I will know more when the results of the oncotype are back. 

 After he did a thorough history and exam, he said he would NOT recommend chemo for me because of the toxicity and at my age, he feels the gain would be around 5%.  He DOES recommend the hormonals, and even for post-menopausal prefers to prescribe Tamoxifen because of past good results with his patients.

I feel that the weight of the world has been lifted just a tiny bit from my arthritic back with the tests and the new onc.  My youngest daughter is attempting to become pregnant with her first child and I feel that I may yet be privileged to welcome the new member of the family.  Since I had made the decision to not have chemo at the beginning of this cancer journey, I was aware that I may have only a few months left...I don't believe that now. 

Good luck and my prayers for everyone.  I would ask that everyone keep please me in their thoughts and prayers for a low oncotype score.

PlantLover

* Takes off invisibility cloak *

Nancy91355 - The burned skin is much better.  Thank you for your concern!  I hope you get better everyday!

msippiqueen

Pompeed continues to be slammed for her choices. If she remains, her intestinal fortitude is noteworthy.



She has tried repeatedly to justify her choices and gets uptight responses from some. Women screaming in CAPS and others displaying righteous indignation over her choices.



Forgive them Pompeed, for they know not what they do.

lago

msippiqueen there are several folks that go and slam people for their choices. I actually had one woman suggest my BS was a butcher for removed level I nodes. I am all for medical treatment when needed. I'm not sure why Pompeed is getting slammed. Based on her diagnosis and the recommendations of her medical team she seems to be making sense to me. Her decisions are based on informed ones.

I think people assume that Pompeed is suggesting that they made the wrong decision. That's now what she is saying at all. I believe she respects everyone's choices… and everyone should respect hers.

Lowrider54

Just popped on to see how Pompeed was doing...sounds good being back in the saddle and working - tough choices - hope things continue to be well as you can be.

I skipped the rads - so sorry for the adventures of Nancy and Bec9861 - they wanted to hit me hard at the sterum and I was having none of it - I was sick for the better part of 8 months - I was done.  Hope the healing begins!

Tough month here - stupid tooth needed a root canal and had to skip the Aredia - OMG...bone pain major - been having to use a cane - yuk...but dentist gave an all clear and I can have it back this Friday...yippee!

Did I miss something?  I don't see anymore slamming going on...

Hugs all...LowRider

Pompeed

Not back in the saddle.  Yet.  Riding is still out.  But I can go to the stable and see the horses and do some teaching.  I just can't hang onto a student on a horse or hang on to my own horse.  Can't risk getting pulled around, messing up the last surgery and taking the chance of making the next one more difficult. 

Arm isn't strong enough yet but is coming back.  Have almost complete range of motion.  But lacking strength and power and fast reaction time.  Physical Terrorist is great -- same guy who did the rehab on my knee a couple of years ago.  Go there 2x per week, tolerate some discomfort doing the work, do the exercises at home between visits, work the arm in a warm water pool and get better. 

Actually riding isn't too far in my future.  Meanwhile, I brush my horse and brush my horse and curry and curry and it's part of my therapy to get my arm mobile and strong again.  The horse is happy and clean!

Lowrider54

You just had me laugh out loud at my desk at work - Physical Terrorist...OMG...Love it!  Oh, and right as the VP walked by and into his office - sometimes I know they think I am out of my mind...I burst into laughter quite a lot when reading on these boards sometimes. 

Glad to hear riding isn't too far off and horse therapy is good therapy!

lago

Yes I too laughed at the physical terrorist comment. I'm going to one on Friday.

My new word today is Metamucksil.

Pompeed

Lago did her last chemo!

It's all UPHILL FROM HERE, kiddo!

Was at the Physical Terrorist today.  Got the arm to rotate through 360 degrees.  Just a little more power and strength to push and pull through the water and I'll be able to swim.  Look out, People, I'll be my svelte self again in no time.

FireKracker

Hi Pompeed......glad to see you posting.cannot believe this thread is still going.Im happy to hear that you are doin well.You are the strongest women i know.God bless.huggggs K

Anonymous

Congrats Lago!!!! You go girl and it's true no where to go but UP!!!!  :-)

lago

Thanks everyone. My worst day of the cycle is usually Thursday… and Thursday is done! Just need to get through today and I think the super suck is over. Just need to deal with 1.5 weeks of suck and that's it. Yay!

Hope all went well with the physical terrorist Pompeed. I just got massaged today from my PT. I think the water boarding starts next week.

Fearless_One

Lago, congratulations!  

JanetinVirginia

Lago - you DID it!!!  So glad it's over & done.  Hope any residual effects are mild & you get back to yourself quickly!

Pompeed - I'd be honored to get up on a soapbox with you:)   I'm going to give this more thought.  Doing something will feel better than feeling powerless and resigned!

JanetinVirginia

Whoops - sorry.  Last note meant to Lowrider re soapbox!  My brain again...

Pompeed

My date with the Physical Terrorist yesterday was OK.  He beats me up for about an hour and a half and then I thank him for beating me up and walk out of his place better and better all the time. 

Worked out today with my personal trainer at the gym.  First time since August.  She beats me up for half an hour and then I thank her for beating me up. 

These people are sadists and I'm (obviously) a glutton for punishment and walk right into their traps and webs and little tricks.  Or so THEY think.  As I figure it, I'm helping THEM out and feeding their egos as much as they are helping me get my life back.  So everybody is happy with these arrangements and -- what the heck -- it makes money (mine but ah, well) move around in the very sluggish American economy.  I'm just trying to do my part to help the country out of a major recession. . . .

Next date with Terrorist is Monday. 

AMP47

Public release date: 14-Feb-2011
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Contact: Oihane Lakar
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34-943-363-040
Elhuyar Fundazioa 
Estrogen reduces aggression in breast cancerThis release is available in Spanish.A team of researchers at CIC bioGUNE has revealed that oestrogen can reduce the risk of breast cancer. Their work shows that oestrogen is capable of reducing the number of breast cancer stem cells, which may explain the lower aggression of the tumour and, as a consequence, the possibility of a better prognosis. The project was published in Breast Cancer Research and Treatment and the team will present the results under the auspices of the International Conference on Breast Cancer to be held in Madrid. The research combined the use of human samples and laboratory cell lines.The identification of cancer stem cells (or tumour-initiating cells) has opened up a new perspective on breast cancer, with new hopes for treatment in the future. To date treatment against cancer was designed to reduce the mass of the tumour. Nevertheless, what has recently been discovered is that, while traditional treatment is capable of killing most of the cell mass of the tumour, the cancer stem cells are more resistant to common treatment such as chemotherapy and radiation. Thus, in order to cure the cancer with greater efficacy and definitively, it is important to find ways to eliminate cancer stem cells as well.Oestrogen is a hormone which is not without its complexity; on the one hand it is essential for the normal development and functioning of the breast and, on the other, this same hormone induces the proliferation of cancer cells once the breast tumour has appeared, i.e. oestrogen is also a risk factor in breast cancer. However, nothing or little has been known until now about the effect of oestrogen on the tumour-initiating cells.Over recent years highly important steps in the fight against breast cancer have been taken, notable enhancing its diagnosis, prognosis and possible treatment, giving rise to a very considerable increase in the survival rates of patients. It had also been proposed that the number of cancerous stem cells is correlated with the aggressiveness of the tumour: The greater the percentage of breast cancer stem cells, the greater the aggressiveness and the worse, thereby, its prognosis."To our surprise, what we have seen is that oestrogen reduces the proportion of breast stem cells which means a mechanism for explaining this better prognosis observed with tumours that express the oestrogen receptor. That is, those tumours expressing the oestrogen receptor are less aggressive, better differentiated and thus have a better prognosis", explained Ms María Vivanco, leader of the research team.Ms Vivanco believes that this study presents a new functional aspect of oestrogen, due to its capacity for acting in a different way depending on cellular type.In the opinion of the CIC bioGUNE researcher, this study "has set out the molecular bases for understanding the direct effect of oestrogen on the proportion of stem cells, whether in healthy or cancerous tissue and the fact that the oestrogen receptor is an excellent prognostic marker". Moreover, this means there is an explanation for a number of clinical observations, for example: the high levels of oestrogen in the blood of postmenopausal patients being associated with less aggressive tumours; the fact that little-differentiated tumours contain more cancerous stem cells, in turn associated with the degree of the tumour, the absence of the oestrogen receptor and low survival rate; and the observed benefit of lactation attributed to a greater differentiation in the breast.The researchers consider that the new study represents a highly important step, opening new doors to developing tools for the prevention of breast cancer.
 

Pompeed

Wait a second.  I don't understand this at all.

As I understand it:

Tamoxifen is used to suppress estrogen.  On the theory that estrogen are molecules which cancer cells use for "food."  Suppress "food" supply as a medical therapeutic means to reduce chance of recurrence.

If I am reading the article properly, the presence of estrogen in post menopausal women is cancer protective (or at least tumors are less aggressive), not cancer inducing.

So what does this mean for use of tamox?

Clinical study or biological research results? 

JanetinVirginia

Hi Pompeed - I'm trying to get my head around this too.  See this thread for more discussion on topic: 

Oestrogen Reduces Aggression In Breast Cancer