Radiation necessary in an early stage cancer

Thanks LUVmy2girlZ , I think I have just confused myself, I was sure I was going to have the rads when they advised it, then read girls still in pain other threads after 2, 5 and even 10 years on rad side.  I am just questioning is it worth it?  My hubby had rads 10 years ago (we are both 47 now) due to testicular cancer and he said if he had to do it over again he would not.  I think he had early heart problems due to this, no one is for sure but several heart spec. could not figure it out, he almost had to have a heart fib. put in but meds helped. This started about a year after his rads and problems increased for years. We never knew it could be the rads (he had most of his body radiated from shoulders to top of legs.) Other people have told me similar problems with heart and lung? Sometimes the side effects have been more life endangering  than the cancer (short term) I am just thinking I would like to be healthier for shorter term of  years than sickly for longer  term..  But who knows??  I think I am just getting cold feet the closer I get to start the rads and the longer I have invested in these expanders. I hate surgeries and this could cause me to stretch this out and end up with some tram flaps 1-2 years  and 3-6 more surgeries.  I am already sick of being sick.  I am just going back and forth and my gut instinct is dizzy. Thank you for your imput. How  are you doing on your reconstuction? 

And by the way, while all of you women are being so supportive and falling all over yourself to support MDB against a guy who has no right to be posting on this board, let me suggest you take a look at what MDB had to say.  Her basis premise is this:

1)  Doctors are untrustworthy because they are influence not by trying to help you but by money alone, i.e., they are not to be trusted.  And all of the studies showing the benefit of radiation were of course doctored by somebody along the way, who probably was paid a boatload of money by the radiation community and manufacturers.

2)  She doesn't care what studies show about the risk of recurrence because . . .well just because.  After all, she only had a 2 cm tumor with clean margins, so why the heck should she subject "healthy" breast tissue to radiation, which could not possibly have any lingering microscopic cancer cells.  

3)   And what is the basis of this ANTI RADIATION campaign, what science does she base it on, what studies support her opinions?  Why NONE, but she just FEELS that she is right.  Her GUT told her so.

4)   And what the heck, if she happens to have a recurrence, if any woman happens to have a recurrence, why just go have it cut out again.  What are the chances that such a cancer might metastatise outside the breast?  Well I suppose none because she just doesn't FEEL that it would.

COME on you pack of Supportive She Wolves.  Bring it on.  Tell me how disruptive I am, how I have no right to be here, how jyou must feel sorry for my poor wife because she is married to  me and everything else you have previously said because you are such sweet, wonderful, caring people. 

.

I think I have said  this before, but I am more worried about women placing so much faith in tests and scans.  I think that is more naive than not understanding the se of rads.  The scans do not  pick up everything.  Tests on lymph nodes may not be as sensitive as we would like to think they are.  Our pathology reports contain a lot of important prognostic indicators that we simply gloss over.  Our staging is just a tool used for tx.  I truly believe that is why some DCIS recur or mets and some stage III don't.  Without taking off the entire breast and doing path on it, you can never be sure what is left behind.  I learned that the hard way, through experience.

I am not saying whether or not rads in early cancer is necessary. I don't really know. I have seen the research and heard of good and bad experiences.  In my case I really couldn't see any benefit to refusing rads and don't know what I would have done if I had DCIS instead of stage III IDC. But I do think relying on detecting a recurrance in time is putting all your eggs in one basket, and your life on the line.   

Thank you pretty in pink - and all of you for your help, you are making me think  and  hopefully I am less confused.   I need to remember that all DCIS is not the same. Everyone's seems to be a little different, and our bodies react differently.  Some seem to think DCIS not to serious, but one of  path test lab said it was suspicious of invasive IDC - (confusing they way some  labs stage differenlty ) but my oncol. said I went from stage 0 to stage 1,   said per size, grade some DCIS stage charts show me to be a stage IIB ??  It is so confusing.  I do need to remember that my cancer is a fast growing, most reoccur. grade 3  and cannot be treated with hormones.  I think I just need to remind myself  - like someone told me "You only have one chance to do this right".  I know we have more that one chance but that choice can be a big one.  I off for the night.  Thank you all for o your help and support.   Holly

Hey guys...I have not checked this thread in three weeks and I CANNOT believe this argument is still on going!! Do you LOVE to argue that much?? Can't anyone get this "Angered Worried so called hubby".(I think he's a fake) off of this thread?? For God's sake "Get A LIFE!!!!!!) It's getting OLD.

I sometimes feel there are crazy people out there trying to stir the pot that have nothing to do with BC at all.

MarieKellie, sounds to me like you made an EDUCATED decision.  I have no problem with that.  I have not seen you on this board blasting the ethics of the entire medical community as one giant conspiracy to separate you from your money, nor have I seen you preach and yell to other women how they have to think for themselves and avoid radiation.  That honor lies with MDB.  I do have a problem with your being one of the she wolves who has attacked me, but somehow I will get over it. :-)

Warm supportive wonderful men are also welcome - most of us have such men in our lives.  Many men have posted here and have been welcome.  Nasty, condescending people of any gender are NOT welcome.  We thought you'd taken your ball and gone home.  Apparently we're not so lucky.

You, sir, are what is known in cyberspace as a troll.  You love saying outrageous things just to stir the pot and get a reaction.  I agree with artsee - my "gut feeling" tells me you're a fake.  People who disagree with you are "she wolves"???  Anyone who had an ounce of respect for the woman in his life would never make statements like you've made.

In any event, this "she wolf" will no longer feed the troll. Since this board apparently does not have an "ignore" feature, I will have to manually ignore any and all postings from you.  I respectfully suggest that everyone else on this board also also ignore your posts and refuse to feed the troll.  He feeds on attention - if we ignore him he'll go away.  

If he really has a wife, God help her. 

 Nasty, condescending people of any gender are NOT welcome. 

 Well then you may wish to consider posting somewhere else.  And by the way, I don't need your permission to post here.  Talk about arrogance and a condescending attitude. 

This is about considering the available medical intervention for an often times fatal disease.   Radiation does shrink tumors so it goes without saying that if one cell was left behind to wreck havoc on my life, I will have fried it to a crip.   I happen to have mammosite only because there was no way I would have made the drive back and forth for 45 days; I was  heavily medicated . 

  We have all watched a BC patient die in our circles somewhere along the way, if not more, it is that common and that deadly.

Thank you Marie Kelley for informing me about once low grade always low grade (in recurrence).  I have a lot to learn. 

.  I know a lady up the street that dropped out of chemo after her 2nd dose, didn't show up for her rads and in fact never saw a doctor again for her BC - this lady began eating almonds (4 a day at least she tells me) and truly believes she cured herself of the breast cancer with her mind.  It has been 15 years. She doesn't get a mammogram nor do breast self exams.  Everytime the lady says she has a headache, I wonder if this will be it but it never is. 

 But I think we are all thinking "I dont wanna die just yet!!!" 

Wow, what a lot of activity on this board, in the past 24 hours ago. Since my last post. And lots of great comments. I've enjoyed ready, every one.

And I think all of my prior posts, speak for themselves. They're here, to read. And today, August 18, 2008, I stand by them, 100%. 

But to just summarize, all of my posts, above.

I have made the decision to NOT do radiation for my low grade breast cancer, Stage 1, 2cm, HR-PR+, HER2-. Cut out with HUGE margins. Negative Nodes. And as I've said, if the cancer comes back, I'll get it cut out, again. 

I made my decision based on all of the studies that I read. I'm a CPA, I don't make decisions, without facts. 

And the facts that I found rendered this breast radiation for a low grade breast cancer, meaningless. 

For MY low grade breast cancer. And I'm just offering this up, here, for other women, with breast cancer to know. What my experience was and is. And question, for themselves. 

Because the questioning, is what is lacking. 

Sure, I also read those studies about how the radiation "helped." Those studies were not convincing, to me. 

Yes, it is my gut feeling, to not do the radiation. But then, who loses, if I'm wrong. Me. I just die, according to many of you posters.The breast cancer is going to return, horribly and I'm just going to DIE.

Even when the worst case scenario, that my breast surgeon told me, was that without radiation, I had a 40% chance of recurrence. Well, 60% didn't recur. 

I am one of those rare people, apparently, who is willing to accept that risk. 

And even then. ALL of the studies said "no difference in life expectancy, if you do the radiation, or not." You just get it cut out, again. 

And to repeat, yet again, because I've already HAD another cancer. The Leiomyosarcoma.That is a very DEADLY cancer. But I got the best version, of it. That was surgically excised, with wide, 3cm margins.

At the beginning of the summer, a colleague at my job, was diagnosed with the WORST Leiomyosarcoma. The uterine kind. It was "hidden" in uterine fibroids. This woman is 41 years old. It's already spread, everywhere. She's in chemo, but chemo doesn't help, Leio. It's NOT good.

To repeat, again. Breast cancer is not the ONLY cancer that you can ever get. If you think it is, you're living in a fool's paradise.  And to "treat the hell" out of some low grade breast cancer, is not something that was of interest, to me. Knowing that any other cancer, could already be in my body. My colleague probably had the Leio for 10 years. She's had the fibroids, for that long.

Plus, I am a smoker. In 2008, there was some "study" that the breast radiation caused increased lung cancer, in smokers. I don't have the link, but I read it.

That wasn't even a factor in my 2006 decision to NOT do the radiation, but now it's like, thank goodness, I didn't do it. 

And despite what some might write, I've never "advised" anyone to do anything. Other than, think for themselves, get all available information, and do what's right, for YOU. 

Because you are the one, living with the consequences. Just like I am.

And as I've said, I have never been happier. I live day to day, and life is great. I'm healthy and happy. 

I could get hit by a bus, tomorrow. Or get pancreatic cancer. Or "name the body organ" cancer. 

I've made a totally intelligent and correct decision, for myself. In refusing this breast radiation treatment. 

To repeat, in the end, everyone has to make the best decision, for their own life.

 I have made my decision. And that is to never get breast radiation for a low grade breast cancer, cut out with huge margins. 

mdb

worriedhubby wrote: When you say something like this, meaningless as it is, you are in fact telling all women with low grade breast cancers with large margins that radiation is MEANINGLESS.  But those are NOT THE FACTS. 

You're right, it's not entirely factual to suggest that radiation is "meaningless" for ALL women with low grade breast cancers and large margins. HOWEVER, the statement MDB made is not very far from the absolute truth. The REAL facts are that the vast majority of those with small, low grade well-excised cancers obtain no benefit at all from radiotherapy...so in that respect, MDB's opinion is much closer to the truth than you realize    Any benefit this majority anticipates from having radiation is nothing more than POTENTIAL benefit... and when time passes with no recurrence, as it has for the majority in every single clinical trial ever done on the subject, then the actual benefit is ZERO for that majority that never has a recurrence.

worriedhubby wrote: As you admit, and contradict yourself later on, the FACTS are that your chance of a recurrence is much greater without than with radiation. 

Well, that's also true...but only partially so.  How much greater your chance of recurrence is without radiation after lumpectomy depends on how high your chance for recurrence was to begin with. Those with low risk of recurrence are going to have the least potential benefit - and as I already stated, that potential benefit transforms into an actual benefit of ZERO for the majority of them.

worriedhubby wrote: ..."the TRUE FACTS, that many women for both low and non-low grade cancers will benefit from Radiation.  The only questions are which ones will and which ones won't"

It's currently relatively easy to identify with a reasonable level of certainty who has the greatest and the least chance of local recurrence. Lots of prognostic variables enter into the equation. Thye're already perfectly capable of, and are doing it in clinical trials and occasionally in clinical practice as well. Some patients, like myself  MBD, Wispat etc are doing it too. It's not a big mystery - the information needed to use it is out there for anyone who's interested in it. Here's just one example (and yes, there a quite a few others) of an identified ideal low risk subset with a 10 year recurrence rate of just 6%. And this doesn't even take into account or utilize the newest research with genetic tumor signatures . This is just very basic use of prognostic variables -

http://www.springerlink.com/content/14541772129745x1/

Results: The overall local relapse rate was 26% (77 recurrences). Univariate factors significantly associated with decreased local relapse included older age, negative nodes, small tumor size, positive estrogen receptor status, and absence of tumor emboli. Significant multivariate variables were age, nodal status, estrogen receptor status, absence of comedo carcinoma in situ, and tumor emboli. A low-risk subgroup of 66 patients was defined with a 6% 10-year local recurrence rate.  

Conclusion: Important patient and tumor variables associated with local breast cancer relapse after breast-conserving surgery can define a low-risk subgroup.

Just a comment here-

There have been a number of studies referenced and excerpted throughout this long thread.  I think somewhere amidst the pile, some have commented that certain of these studies are recent, and others are not. 

I would like to encourage readers to look at the dates of data collection and publication of studies referenced here or anywhere else.  It might influence how you look at the information presented.

For example, if I am not mistaken,  although the springerlink referenced above ("Factors associated with local breast cancer recurrence after lumpectomy alone" )  may have only been uploaded to the website a couple of years ago, the article was originally published in Annals of Surgical Oncology in July 1996.

I am not picking on anybody here.  As has been pointed out, most people's intent here is to inform and educate.  Knowing the dates of these studies helps me put them into an important context.  I can't tell you the number of times I have gotten excited by some "finding", only to look at the date, and know I need to look at whether a particular study has really held up over the years. 

MarieKelley posted this study:

"http://www.springerlink.com/content/14541772129745x1/

Results: The overall local relapse rate was 26% (77 recurrences). Univariate factors significantly associated with decreased local relapse included older age, negative nodes, small tumor size, positive estrogen receptor status, and absence of tumor emboli. Significant multivariate variables were age, nodal status, estrogen receptor status, absence of comedo carcinoma in situ, and tumor emboli. A low-risk subgroup of 66 patients was defined with a 6% 10-year local recurrence rate.  

Conclusion: Important patient and tumor variables associated with local breast cancer relapse after breast-conserving surgery can define a low-risk subgroup."

Thanks for posting that, MarieKelley. That's really relevant information. 6% recurrence. To me, that is ... nothing.

For my part, and I've posted this link, before, it was this study posted right here, on breastcancer.org, in 2006:

http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp

Again, the pertinent conclusions:

"Study design: Austrian researchers used the results of two studies conducted by the Austrian Breast Cancer Study Group (ABCSG) to identify groups of women who had an extremely low risk of recurrence (the breast cancer coming back).

All the women were post-menopausal and had breast cancer that was:

• hormone-receptor-positive,
• smaller than three centimeters, and
• node negative.

All the women had lumpectomy followed by different types of hormonal therapy:

• In ABCSG-6, 698 women took tamoxifen with or without aminoglutehimide (an old-fashioned kind of aromatase inhibitor).
• In ABCSG-8, 875 women took either five years of tamoxifen or two years of tamoxifen followed by three years of Arimidex (chemical name: anastrozole).

About half of the women in each study were randomly assigned to receive radiation after lumpectomy and before hormonal therapy. The other half had lumpectomy followed by hormonal therapy—without radiation.

Results: After about 10 years of follow-up in the ABCSG-6 trial, the cancer came back in

• 3.3% of the women who had radiation, compared to
• 5.2% of the women who didn't receive radiation.

However, this difference was not significant, meaning it could be due to chance rather than due to the radiation.

After about four years of follow-up in the ABCSG-8 trial, the cancer came back in

• 0.24% of the women who had radiation, compared to
• 3.2% of the women who didn't have radiation.

This difference was statistically significant, meaning that it was likely due to the radiation and not just to chance.

There was no difference in overall survival in either trial between women who had radiation treatment and women who did not."

In this study, we're talking worst case, 5.2% it comes back. Not that 40% that the docs told me. 

Of course, what WAS that "40%?" Most likely a relative percentage, not an absolute percentage. Like 3.3% versus 5.2% in that first instance. That's like more than 50% better outcome, if you do the radiation.

But in real terms, 5.2% recurrence rate, doing the radiation,means, nothing to me. Compared to the potential radiation side effects. Which are HUGE.

For my part? When I was disgnosed with my 2cm IDC, in May, 2006, I was terrified. I was STILL being tested for my Leio cancer. Negative, on that, and now ... THIS.

It was awful. And I know you all know how I felt.  For May, June, July I was in a fog. There was so much going on, and I hadn't read, anything and I just went along, with everything. All of my cancer "readings,"prior to then, had been for my Leio cancer.

But it was only after the successful, totally wide margins Lumpectomy, August, 3, 2006, that I started really thinking about this radiation. And questioning it. And started reading about it. And the more I read, the more disturbed I became. Everything that I read was convincing, me that this radiation was harmful, for my low grade breast cancer, cut out with huge margins. 

I guess, "fortunately" for me, my lumpectomy caused a HUGE Hematoma to my breast. It was so gross, my surgeon, was even appalled.  But what that did, was delay, the "automatic" radiation. And gave me time, to think. And read all of the studies that I could find. And make my own decsion.

As I've said over and over, I actually went to the SIM appointment. But when finally presented, with signing that consent form, I just walked out.  A liberating day, for me.

Because, a lot of women do not have that time, that I had. They're put into some "slot," and then just processed through the "radiation mill." "You have this 2cm IDC, you WILL do the radiation treatments."

Next.

Well, I said, no. I will NOT do that. 

And for me, I did keep going back to the radiation docs trying to get them, to agree with me. And they never would. Because there is the "Radiation after Lumpectomy Standard of Care." Developed from studies done, 30 years ago. Before Digital mammography and MRIs. 

They don't even DO any studies in the US, anymore with lumpectomy alone, vs lumpectomy with Radiation. Like that Austrian study, I quoted, above. Because in the US, apparently, it's finished. That "standard of care" has been established, 30 years ago, and that's what they're going to inflict on everyone. No matter what. Even though, NOW we do have digitial mammography and MRIs.That find the tiniest cancers. That were never the subject of any radiation studies, 30 years, ago.

Anyway, my Light Bulb that finally came on was when I realized that I was NEVER going to get the radiation oncologist docs, to agree with me. They have to recommend the "Standard of Care" or they are open to lawsuits. Radiation, is what they .. DO. Irradiate women's breasts, whether they need it or not. 

So, I just made my own decision, to forgo the radiation. And moved on. And I'm totally happy. I have my breasts, and they weren't turned into leather, from any radiation and I have no increased risk of lung cancer, from the radiation and I'm enjoying life.

And over two years later, still cancer free. I'm looking good. If the cancer was going to recur, aggressively, as some here have threatened, it would have done so, already. That's the definition, of an agressive cancer.

If it's recurring, as I live, it's another low grade cancer. In two years, or four years, it will show up as micro-calcs. On my digital mammo/MRI. And I'll get it cut out, again. With no radiation. 

Again, we all have to make our own decisions. My point, there is another decision, out there. To not do the radiation. Based on facts. Current facts, in breast cancer treatment.

Just make sure that you have all of the facts. Don't just blindly listen, to these docs. 

It IS a very personal, decision. Do what's right, for you.

I declined the radiation, and that was the right decision, for me. 

mdb

Loonymo....I had DCIS....Lumpetomy and radiation.....My surgeon highly reommended the rads, and I neve considered not doing it.....I am now just nine treatments away from beng DONE.  I have had almost NO skin problems, and only some fatigue.....Going every day has been a pain, but the experience has not been a bad one for me....I think that most women have experiences like mine, or nearly like mine....I read all the horror stories of what rads can do, and felt truy sorry for those womenwho have had awful skin problems...burns, blisters, weepy skin, etc...and fully expected to have the same kind of problems...Then I realized that people who have problems are the ones most likely to write about them....I know I would. 

So...I learned that each one of us is so different, and our experiences with any kind of treatment is so individual....I'm always amazed at this, too......All we can do is gather information, talk with our doctors, and make the decision that is right for our own situation...For me, I wanted to redue my chances of a reurrence as much as possible...Can't take Tam, so rads was my best shot.  When I am done...in a couple of weeks....I will have only a five-percent chance of having a recurrence. So, once again...for me....the choice of doing rads was a good one.

Good luck to you.

Sansy

The fact that we have different experiences to share with each, is what is important about this thread. It is a shame that this thread has been hijacked by someone who prefers to call people names who do not agree with him. As women survivors, we all understand how difficult all of this is, and it is good that we can come here, respect each others opinions, and be respected for our own. Hopefully, our varied experiences will help others to make a decision that they truly feel is right for them. As I said, I wish I had had the time to think about my treatment, and become more educated on the side effects, but I was in the cancer fog, and not thinking at all. I am proud of all of you for not backing down on your stance, in spite of the nasty comments from you know who. You have given others food for thought, and that is what this whole site is about.

Dealing with cancer is an experience that only those who go through it understand what it feels like. It is so much easier when we have the support of others who have been there, and of friends and family who are there for us. Like many of you, I feel blessed that my husband has supported me in every way, and never tried to persuade me to do something that I felt was wrong for me (like take arimidex). He is very proud of my new healthy regime and enjoying our evening bike rides together, which has helped both of us. Now if I can just get him to take his vitamins! LOL

That said, since I have had my say, I will bow out now, wish you all good health and great happiness.