Radiation necessary in an early stage cancer

worriedhubby -

You really need to depart from these boards as I can see that you cannot respect the choices of women that are here.

Here's some suggested reading for you:

http://www.amazon.com/Breast-Cancer-Husband-Diagnosis-Treatment/dp/B000E1KPUK/ref=sr_1_4?ie=UTF8&s=books&qid=1217692476&sr=1-4

mdb, For invasive breast cancer, Radiation therapy not only significantly reduces the chance of local recurrence, but also metastatis.  Many studies have shown this.  For inductal, non-invasive cancer, you might be able to get by without radiation therapy without increasing the risk of mortality or without significantly increasing the risk of local recurrence.

http://jco.ascopubs.org/cgi/content/full/23/8/1607

To Worried Hubby: 

I know where you are. I was there, myself. But, do you know, where your are?

Well, I don't know you, at all. So I won't even begin to say. But where I was is that I kept going back to these radiation oncologists, with all of my "studies" trying to get them, to agree with me. But then, they had all of their studies. As do you. And they kept telling me those. Trying to get me, to, agree, with them.

As you're doing, on this board. 

Well, the turning point, for me? When I walked out, of the Sim appt. FINALLY realizing, I was NEVER going to get these radiation oncologists, to agree with me. I didn't want it, and I didn't do it, and I'll live with the consequences.

There is no "right answer." And that is why I continue to post, here. 

Women, DO have a choice. If you research, and research and RESEARCH. Which is what I did. And for ME, this raditaion was just such a total negative. On so many ... levels.

For you and your wife, Worried Hubby, it was not. The radiation is a HUGE Benefit. I sure hope that it all works out well, for you.

For you other women, out there? Research, and QUESTION. Standards of care, change. Dr. Welby, is gone. 

In this Internet age, we're all responsbile, for our own health care.  Make your OWN decision.

I did. And I'm totally happy. WITHOUT the useless radiation. For a Stage 1, no node involvement, breast cancer.

It's just, ludicrous. And why the USofA pays SO MUCH more, for health care. 

mdb

To: prettyinpink100:

Great link! I'll just copy it in, here, in case it goes off the breastcancer.org home page, in the future:

http://www.breastcancer.org/treatment/surgery/new_research/20080731.jsp

This article just emphasizes, the role of education. Of women, reading sites, like this, and becoming knowledable of the options available to them. 

I'll just relate another personal experience, of mine. Sorry, this is a repeat. But in August, 2007,  I had my mammos, and my right X-cancer breast was Birad 1, but my left breast was Birad 4. Even though, at the same time, I had an MRI on BOTH breasts, August, 2007. Birad 1, on both breasts. 

Yet, my doctor, was relentless. You NEED a stereotactic breast biopsy. On the left breast. I didn't want it, but finally agreed. And then, the stereo comes back with ADH. NOW, she wants an exisional biopsy. WITH a Birad 1, on my Breast MRI.

In the end, I did do the Exisional Biopsy, on my left breast. Turned out, Nada, nothing.

 Yet, the only reason I did it is because the right breast cancer had been mis-diagnosed, with a false-negative stereotactic biopsy in November, 2002. I really had cancer, in 2002. It was missed. And finally presented as a 2cm Stage 1 breast cancer, four years, later. But only because I had missed so many mammos, because I was so weary of all of the tests for my Leiomyosarcoma cancer. Stupidly, on my part, I put the mammos on the back burner. 

My point? I do believe in biopsies and surgery, to cut out cancer. It works. It's worked, for me. And it's worked for millions, of women.

These other ... "treatments?"  This radiation and these hormones, and all the rest of it. It's just, not worth it. Again, to repeat, for a Stage 1, node negative breast cancer. Which is what this thread, is about.

I read all of the time about all of these "fundraisers" for breast cancer. What's the famous one, the "Susan G. Komen Race for the Cure."

But after I don't even know how many $Billions of dollars, raised, there's STILL no cure.

I remember when I went to my first radiation oncology appt, Sept, 2006, and was waiting there, and this person showed up and said, "Did I want to enroll in this new clinical study about how I reacted to the radiation." This was at the Seattle Cancer Care Alliance/University of Washington Medicine. One of the top cancer care facilities, in the US. 

I just said .... No. Even at that first visit, I knew I didn't want this. This radiation. When, if my cancer came back, I could just get it cut out, again. 

But it's "studies" like this, is what all of that $money from the "Susan G. Komen Race for the Cure" is being raised is wasted on. A "study" on "How I react to the radiation" is NOT a CURE. It's just .... stupid.

I will NEVER participate in that "Susan G. Komen Race for the Cure".

I'm sorry, if my blunt statements, offend, anyone. But this is what I think.

To repeat, everyone should learn everything they can, and do what is right, for themselves. 

mdb

Mdb, I totally agree with you about never participating in one of the "races". I have been blasted for saying this before. I do think that some of them give money to women with BC who cannot afford  treatments, and I would support that wholeheartedly, but I cannot support the drug companies until they are willing to support prevention. Why are we getting this disease in the first place and what can we do to stop it? Why are we not being educated on things we can do to lower our risk, that do not invovle popping pills? Like you I was approached, before I even met my onc.. by the research dept nurse, talking me into being a part of a study on Arimidex. I was in the fog at the time and signed up until I finally had enough of my mind back that I could question why I should take this drug. The stats they gave me, that it will reduce my risk of recurrance by 50%, which I later realized was only 5% in my case. I was mortified that they would put me on a drug with serious side effects for those odds. I feel that I have better odds on my own with my healthy lifestyle changes. When I told them I had changed my mind, they were very persistant in trying to talk me back into it. I left in tears, I was so furious. They were trying to make me believe that I would not be able to keep the cancer at bay on my own. There have been numerous studies that prove the merits of weight loss, nutrition and exercise, but the hospital told me none of this. They only use the stats provided by the drug companies. Just like radiation, these drugs can be lifesavers for women with later stage, and more agressive cancers, but for those of us lucky enough to have caught it early, there are safter means of prevention.

When I was dx, I did not go to any web sites or want to learn anything about BC. I just wanted the damn tumor out and go on with life. I also began listening to my inner voice which told me to make my health a priority. I started exercising immediately, eating well, taking supplements and I feel great. I no longer worry that it will come back, because I feel that I am building up my immune system so that it will be able to fight all those free radicals that we are all exposed to. I wish I had researched rads before I did them. I never felt they were necessary in my case, but I was just following doctors orders at the time. It is ironic that I do not fear the return of BC, but I do fear the long term effects of rads.

That is why this has been such an important discussion. Kudos for those of you who are keeping it going and showing all sides of the issue. It will enable many women to understand what they are getting into and make a more educated decision based on their dx and their own personal instincts.

Best wishes to all of you, whatever your choices are.

I continue to shake my head at some of the things you and MDB say:

 but I cannot support the drug companies until they are willing to support prevention.

drug companies are in the business of developing drugs that can make them money.  That is their sole purpose in a capitalistic society.  Why is this surprising to you?

Why are we getting this disease in the first place and what can we do to stop it?

Well if you can figure this one out you will get a Nobel Prize. 

 Why are we not being educated on things we can do to lower our risk, that do not invovle popping pills?

Is it not up to the individual to educate themselves?  Are you blaming society because you ignore all of the education out there available to you? 

 I feel that I have better odds on my own with my healthy lifestyle changes.

How you feel is hardly scientific evidence of anything. 

When I told them I had changed my mind, they were very persistant in trying to talk me back into it. I left in tears, I was so furious. They were trying to make me believe that I would not be able to keep the cancer at bay on my own. There have been numerous studies that prove the merits of weight loss, nutrition and exercise, but the hospital told me none of this. They only use the stats provided by the drug companies. Just like radiation, these drugs can be lifesavers for women with later stage, and more agressive cancers, but for those of us lucky enough to have caught it early, there are safter means of prevention.

Can you point to any studies that say weight loss, nutrition and exercise are more effective than radiation in preventing recurrence of cancer, or is this something you "feel"

 I also began listening to my inner voice which told me to make my health a priority. I started exercising immediately, eating well, taking supplements and I feel great.

What took you so long.  I've been listening to that innervoice ever since I was a young athlete and continue to exercise and eat well into middle age.  I'm healthy too, so assume that it has been working. 

 I no longer worry that it will come back, because I feel that I am building up my immune system so that it will be able to fight all those free radicals that we are all exposed to.

There's that old, non-scientifically based feeling again.

  I wish I had researched rads before I did them. I never felt they were necessary in my case, but I was just following doctors orders at the time. It is ironic that I do not fear the return of BC, but I do fear the long term effects of rads.

Perhaps, with all due respect, you need counseling. 

That is why this has been such an important discussion. Kudos for those of you who are keeping it going and showing all sides of the issue. It will enable many women to understand what they are getting into and make a more educated decision based on their dx and their own personal instincts.

How does listening to "feelings" and an "inner voice" translate into making a more "educated decision"???   With all due respect, that sounds to me like make a decision based on prayer or on some kind of religous superstition, like those who avoid all Western Medicine because they will be cured by God.  Is that an "educated" decision because they "feel" they are right?

To: LindaMemm:

You said:

"Why are we getting this disease in the first place and what can we do to stop it?"

That IS the question. In a nutshell. And the docs have no answer, for that, at all. 

Modern, US medicine, focuses on the "disease." NOT the prevention, of the disease. It's just not covered, at all. 

I do have a primary care, physician, and I had my annual physical, last fall. And I do have borderline high blood pressure, it's like 130/85. It's not the best, but it's not life threatening.  But what was her recommendation? I go on some "reduce the high blood pressure" pill.

In my experience, that's all doctors DO these days, Prescribe pills or put you on useless adjuvant treatments. Like the recommendation for radiation breast cancer treatments, from studies that were done, 30 years ago. WAY before, digital mammography and breast MRIs.  Which are now, picking up, the tiniest cancers.

And based on this latest treatment, I should go along with a treatment recommendation from a study 30 years, ago? When there wasn't any digital mammography OR breast MRIs. 

And I've had both. So far, Birad 1, on both breasts. After two years. 

Forget it. I'm NOT doing it. 

LindaMemm wrote:

"The stats they gave me, that it will reduce my risk of recurrance by 50%, which I later realized was only 5% in my case. I was mortified that they would put me on a drug with serious side effects for those odds. I feel that I have better odds on my own with my healthy lifestyle changes."

Yes. This is the word, that must be gotten out. They skew, the statistics.  If some study, reduces the recurrence, with raditiaon, from 4% to 2% that's a "50% reduction." Which, according to the scientists, is "statistically meaningful."

But according to me, and I guess, you, it's just .. .stupid. With these potentially horrible side effects. 

Linda Memm:

"I also began listening to my inner voice which told me to make my health a priority. I started exercising immediately, eating well, taking supplements and I feel great. I no longer worry that it will come back, because I feel that I am building up my immune system so that it will be able to fight all those free radicals that we are all exposed to."

Bravo! That's exactly what I've done, as well. You're doing exactly right,  LindaMemm.

The concept, is so basic, it boggles my mind that people don't get the connection. Which is that what you eat, and if you exercise, and your stress level, are primary deterimants, of your health. To most people, they don't belive these factors have ANY connection, with their health. 

Just go out and get the latest, drug. If you get sick. 

Yet, our minds and our bodies, are one.

I was talking to my 19 year old daughter, today. And she tells me,"your hair is really so full and pretty." That's a LOT from my daughter, my most severest critic.

But her comment, arose, that 10 years ago, when I was divorcing her father, I had a bad hair, series of years. I was under so much stress, my hair just thinned, horribly. And then, I got two cancers. The Leio and the breast cancer.

There is no doubt, in my mind, that this was all, connected.  To my stress level. THAT stress is what prompted, my cancers.

But, by now, I'm totally happy. I've survived, two cancers. And blew off the docs, for their "cover their ass" treatments. I now just live, for today.  And I'm just so happy. And I'm not getting stressed out, about anything. Anymore. I refuse to.

Every day, is a gift.  And I'm enjoying, every day.

Because in the end, that's all that we have. Today. 

mdb

GramGramSue, you are so lucky that your HMO has offered you so much guidance. It is in their best interest to make sure women do not have any uncecessary treatments and it is great that they are looking at things from every angle. In my case, since my insurance will cover it, I felt that I was pushed into treatment because why not, it is covered. They made alot of money from me that I do not feel was warranted. My tumor was 1.6 with no nodes and wide clear margins, yet they still pushed rads. And no one ever talked to me about nutrition or losing weight. All the things that I have changed, I had to figure out myself, without main stream medicine.

I was watching the Olympics today, and they were doing a story on chinese medicine. What we consider mainstream is experimental for them and vice versa. They were talking about how the two are finally beginning to merge. They interviewed a Ca. woman, 11 year survior of cancer, who is thankful that regular medicine got rid of her cancer, and non traditional methods have kept it from recurring. That is where I am. I am so thankful that I had great doctors who got my tumor out, but they did not offer me any alternatives but drugs. I do not like putting chemicals in my body, so I found another way. We all have to make the decsions we feel are right for us.

mdb We are definitely sisters on the same path. I too get comments on how great my hair and skin looks. My uncle just had surgery. He is only 10 years older than me. When I told my son ths he said, no way. Mom, you look like you are a lot more than 10 years younger than him. I have more energy know than I did in my 20's, but that is when  I was so sleep deprived because this same son never slept! He was always looking for action! Now that he is out of the house, I have some peace and quiet, and get plenty of rest.LOL

I hope that integrated medicine will start to become the norm. It will not only save our country from all the heavy finanacial burdens of what we have now, but it will save lives, by encouraging people to change theirs. We have a lousy diet in this country which is creating havoc in our bodies and we need to all learn how to take better care of ourselves. We tend to like to take the easy way of popping a pill for everything, but slowly people are realizing there are other ways. I just wish I knew before what  I know now, and maybe I would have never gotten bc to begin with!

mdb, I wish you lived near me, so we could walk and talk. It is not easy finding people who have gone through what we have and come out on the same path. Anyway, let's keep inspiring each other.

You don't even need to read any further than the abstract to see that over 20 years, there's no significant survival benefit between those 3 arms.  Mastectomy, lumpectomy alone and lumpectomy with radiation yield such similar survival benefit at the 20 year mark that the difference is not even statistically significant.   

I am sure us cancer patients who underwent radiation therapy are happy to hear it does not affect survival benefit at the 20 year mark.  Kinda was wondering if rads treatment might work against our favor.  ty MarieKelly

Dear Summer,

You wrote:

"I am sure us cancer patients who underwent radiation therapy are happy to hear it does not affect survival benefit at the 20 year mark.  Kinda was wondering if rads treatment might work against our favor.  ty MarieKelly"

I re-read this many times, and cannot discern if you were being sarcastic or not.  Could you clarify your meaning?

All in all, do the Moderators here ever lock threads, and let them sink to the depths of the cyber-sea?  I am asking because of anything on these boards, this thread is causing me sleeplessness.   But I try to tell myself that this thread has become a battle of personal crusades, rather than one intended to help the original poster, so it should be viewed in that light.

 Or should it?

Easyquilts wrote;

"I chose to do radiation because without it, my chances of a recurrence would have been 20%...Radiation will reduce this to only 5%....And, I believe this will improve my survival overall....How could it not?"

Well, Sandy, because the studies that your are relying on say that it doesn't increase overall survival.  Because that is what they all, say.

On another note, if you're willing to reduce your risk of recurrence, in your message, by 15%, and it's worth, all of the side effects, of the radiation, than that IS the best course, for YOU. You said it:

"I was not willing to take the chance, so gladly go to my treatments every day....I trust my doctors, and like my rad team.  I feel that....for me....this is the best choice...."

That's great. For you.

All I'm saying, here is that I'm willing to take the chance. I had a low grade breast cancer, that was taken out, with clear margins. I'm willing, to take the chance.  That the breast cancer, won't recur, without the radiation.

And if it does recur? I'm having six month mammos. It will be cut out, in plenty of time. If it recurs. 

As I've said, my May, 2006 2cm IDC was the result of a mis-diagnosed, Nov/2002 stereotactic. In 3.5 years, that cancer grew to 2 cm.And it was successfully cut out, with HUGE margins, in August, 2006.

2CM is NOTHING. It's less than 1/2 inch. In FOUR years. 

That's just my experience. 

Sandy, YOU are the electing radiation, with DCIS ... all I can say is you're just TOTALLY risk, averse.

Everyone can pummel me, on this, but DCIS is NOT cancer. Cancer, by it's definition, are cells that are spreading, uncontrollably. DCIS are abnormal cells, but they are still, trapped in the duct.  DCIS stands for "Ductal Carcinoma, In Situ." With In Situ, meaning, "in place." i.e. NOT spreading. 

That is NOT "cancer." It could become cancer, but then, again, it couldn't. 

Hey, you "studies" people, come here and post the "studies," about that. 

I've read some where there was so much DCIS discovered in autopsies, of women that died from something, else.  The DCIS was just sitting there, while they died, of a heart attack, or liver failure, or whatever.

Sandy, I just disagree, with you. 

I am NEVER getting breast radiation. Ever. 

LovelyRita wrote:

"All in all, do the Moderators here ever lock threads, and let them sink to the depths of the cyber-sea?  I am asking because of anything on these boards, this thread is causing me sleeplessness.   But I try to tell myself that this thread has become a battle of personal crusades, rather than one intended to help the original poster, so it should be viewed in that light."

LovelyRita, this thread's intention, is to inform. To inform, all of us women, who have/had breast cancer. 

Sandy, easyquilts, has elected to get radiation treatment for her DCIS diagnosis. Me, mdb, had a 2cm IDC diagnosis, in August, 2006, and I refused, the radiation. 

Neither myself, or Sandy, are trying to tell anyone else, what to do. But we're just relaying what WE did. 

As Sandy said, everyone has to make their own decision. And as I've said, the only reason I'm here, is to perhaps let women know, there IS another, decision. To NOT do the radiation. 

I read all of the studies, and made my own decision. This radiation was NOT worth it, to me. And it's not. 

And all I want to say is for everyone to just not listen, blindly, to some doctor. Because, now,with the Internet, we have all of the resources that the docs have.

Of course, the docs have a different agenda. If they don't offer EVERY treatment available, for whatever, THEY could be sued, for malpractice.

So, they offer Sandy, Radiation, for DCIS. Which is just, ludicrous. But, the docs, are covered. They can never be sued.

And sorry for the repeat info, but in August of 2007, I had another abnormal mammo on my left non-cancer breast.Which ultimately ended up in a negative surgical biopsy.

My point? Again, I think I already posted this, but my surgeon told me that with the negative surgical biopsy, I could do nothing, or get 6 month mammos, or I could get a bi-lateral mastectomy.

The latter reccomendation? I was like ... WHAT?

It's called "doctors covering their asses." 

I elected the 6 month mammograms. 

Lindamemm, more soon,

 mdb

WORRIEDHUBBY,

You said "...But common sense tells me there has to be a survival advantage.  If there is a much greater chance of a local recurrence, statistically it just seems to follow that some local recurrences result in metastatis.  How could this possibly not be the case?"

Yes, statistically some local recurrences will result in metastatic disease.  But if you look at Table 3 in the Fisher 20 year study (the longest study comparing lumpectomy with and without radiation), you'll notice that although local and regional recurrence is higher among those who had lumpectomy alone throughout the 20 year study, both distant and contralateral breast recurrence is actually a bit HIGHER beginning at 5 years for those who had radiation after lumpectomy.

In order to understand why this is so, you need to consider the study design. This study included dissimilar study participants - about half had small tumors 2 cm or less and the other half had tumors as large as 4 CM.  62% had negative nodes, but 26% had 1-3 positive nodes and 12% had 4 or more nodes positive.  Some were ER negative, some ER + and some ER status unknown.  When there is such a mixture of different stats among the participants, it's no wonder that you're not necessarily going to see any survival benefit and also no surprise that radiation to the breast probably isn't going to prevent distant mets in those with positive nodes at initial diagnosis. You've got people with positive nodes, large tumors and more aggressive disease in the same study with those a much lower baseline recurrence risk - and those higher risk women are the ones more likely to suffer not only distant recurrence, but also a contralateral cancer despite whatever treatment may or may not have been given.

sorry to jump in here but yes mdb you might get pummelled for the dcis is not cancer line.  Remember Ductal CARCINOMA in situ.  Yes the cells are uncontrollable (definition of cancer is it not) they just haven't broken through the ductal lining.  If dcis was not cancer, why the hell did I and so many other women have to go through mastectomy or lumpectomy to treat it (mine was throughout my whole breast and only AFTER my mast they found invasive - it was hiding!)  So please be considerate regarding those dcis patients that have to go through treatments that are as mutilating as those with "cancer".

FYI - I did do rads, because I had bad margins - for me, it was a good choice.

 Gentle Hugs,

Trish

I have fear of what the rads will cause too. Wish I knew this information about rads prior to treatment.   I ended up getting most of the radiated side removed, now I have a lot more healthy tissue there.  Will this prevent a secondary cancer brought on by rads?  I dont know, but I know the tissue looks way more normal/healthy as opposed to the disfiguring radiated tissue. 

I was stage II, IDC, no nodes involved and opted for radiation following chemo.  All the risks were explained to me, but I still wanted it.  Mentally, I needed to feel I had "done it all," the first time out, so that if the cancer came back I wouldn't have any regrets down the road.  I have done everything available.  For me, it was basically the equivalent of the women who don't have to have a mastectomy, but go for a bilateral because mentally and emotionally they need it.  Everybody's emotional needs are different.