Radiation necessary in an early stage cancer

Bravo SherriM!  You said it beautifully.  Both my PCP (male) and the rad onc I liked (female) told me that many of my decisions through this process would have to be made in the end by listening to my gut feelings.  So at least some in the medical profession recognize the gut as a legitmate tool for patients to use when making these decisions. 

Really?  I had a gut feeling that I should have my ovaries removed when they did my lumpectomy.  Even though it wasn't absolutely medically necessary, and I was already menopausal, my docs went along with it. My gut feeling was also telling me i should be on arimidex and not tamoxifen...so that also played into my desire to have an ooph...to make sure I didn't do a backslide.  But I was having alarm bells going off anyway with regard to keeping them.  I felt an urgency in getting them out and had to search and search to find an OB/GYN who was available to remove them at the time of my already scheduled lumpectomy.  (It's tough coordinating surgeons' schedules.)  But after much perseverance I found her.

Path report came back showing that one of them had a rare tumor (Brenner) in it that was expressing estrogen.

Sherri, You are so right that we have to listen to our inner voices. By listening to mine, I was able to catch BC early and by listening to mine, I have found the intuition to change things that will keep me healthy. Nats fan, you are so lucky that you had docs who explained it all to you. Mine sent me home with a notebook, which I could not even look at because it was so upsetting. They never told me about all the long term effects, only that I would probably be a little sore and tired. Ironincally, I was never sore or tired because of exercising my way through it. I did however have constant panic attacks while going through treatments. I just kept thinking that the whole thing was so dangerous.I was so scared by it all. I do believe that it was my inner gut telling me that I should have questioned the whole thing to begin with. I felt so guilty with my meltdowns, because there were women there who had done chemo and worse off than me, but no matter how hard I tried, I was an emotional wreck about the whole thing. I was fine the minute I left the hospital each day, and until the last treatment, I had a sense of foreboding each day.I still believe that in my case, the treatment was more harmful than helpful. I know I can't do  anything about now it except build a strong immune system that will be able to ward off the effects of radiation.

We all have a 6th sense, some of us are more in tune to it than others. There is nothing wrong with making a decision based on our instincts. It is how people have survived for centuries, before there were statistics, or modern medicine, or the internet. It is how animals survive everyday. No one tells a rabbit not to run into the road. Most of them instinctively do not when they hear a car. But once in a while one will run anyway, and suffer the concequences. Yeah, people have died from the wrong decisions, but they have also survived. Unfortunately, science cannot prove what goes on in our heads. But science also cannot prove their is a God, but I can feel that he does exist whenever somone loves, whenever a child is born, and whenever I take the time to smell a rose. I believe God gave us intuition, as one of our many human miracles and trusting in ourselves is trusting in God.

I think I see what the problem is and why I won't post on this subject anymore because it is futile doing so.  If some of you think you can rely on faith or instinct to guide you in making important medical decisions, who am I to argue.  Heck, if you want to rely on astrology to tell you what to do, that is your right to do so.  Me, I will stick with rational and logical thoughts, which will entail educating myself as much as possible on the risks of alternative treatments and non-treatments and then going from there.  I listen to my gut only when I am hungry, not to make life or death decisions.  I just don't believe wishing on a star has any value whatsoever but I am certainly not going to convince any of you who think that wishing on a star is a valid way to make decisions.  Good luck everybody.

"worriedhubby - no one said that they were making decisions based on gut feelings alone, but that listening to gut feelings is one of a number of tools used when making decisions.  No one is saying to not do research or not to get the advice of medical professionals.  But often these decisions are not black and white, and all the stats and rational and logical thoughts will not fill in the grey areas.

I have rarely called someone out on an internet forum, but I will do so in your case.  You have come across as smug and arrogant, and condescending as hell to those who do not share your inflexible views.  I think many of us here will join me in saying don't let the door hit your ass on the way out."

Natsfan, I guess you were, successful! WorriedHubby has deleted all of his messages in the past 24 hours. 

But then, ha, I would have liked to have read them.I've been really busy, at work, and haven't had time to check this board.

SherriM wrote:

"and WorriedHubby, if you're still out there, there's something that you and mdb both seem to forget when it come choosing tx...and that is intuitive intelligence."

SherriM, I hope that you're confusing me, with someone, else. 

I'm mdb, who had the 2cm IDC and refused radiation and tamoxifen. Because my intutition, told me, it was useless. 

But then, I don't have to say, anymore. I've already said everything, on this thread.  Over and over.

Yet, I'll continue, too. I'll repeat it, right now.

In May, 2006, I was diagnosed with a 2 cm IDC, HR/PR+ HER2-.If you have to suffer from breast cancer, this is a very positive diagnosis.

I had lumpectomy surgery, August 3, 2006, that excised the cancer, with wide margins. No cancer, left, in the pathology reports. Totally clean.

The Radiation doc recommended the 12 weeks (or whatever), of radiation. To the entire breast.  And I just said ... NO.

I'm NOT doing it.  Because it made no sense, to me. WHY irradiate the entire breast for a less than 1/2 inch cancer, that was cut out, with huge margins.

I'm NOT doing that. EVER.

Then, I went to the breast oncologist, for the Tamoxifen/Arimidex shit, and she was right on. She told me, "If you didn't do the radiation, this Tamoxifen/Arimidex deal, is worthless. At best, it will give you some 5% less chance of the cancer, returning."

And this isn't me, reading studies, on the Internet. This is what the oncologist doc, told me. 

But then, I was never going to do it, anyway, but some small,  victory, for listening, to myself.

I will never have any breast cancer treatment, that is not surgical.

I "guess" a lot of people elect all of this radiation and drugs, becasue they "never want it to come back."

I'll say. For one thing; these "treatments" don't even, guarantee that. And the most telling thing: So MANY of your other body parts, could FAIL, while you're stressing out, about breast cancer. 

I have to say ... THAT is what I don't get. 

We're not talking, Mrs. Edwards, here. With her stage 4, metastized to the bone, breast cancer. We're talking about early stage breast cancer, cut out with wide margins, and hormonally positive. 

Mrs. Edwards, needs chemo and radiation. Early stage breast cancer women, whose cancer has been cut out, with wide margins, do not.

And I will continue, to repeat this. Over and over. 

And for my part, I HAVE had, another cancer. The Leiomyosarcoma.  

Many of you, could have "hidden cancers," as well. There's no "tests," so you don't even know. Our breasts are external, so they test the hell out of them.

But how many posters, here, have ever had a Chest/Abdomen/Pelvis CT scan? Which could reveal so many MORE cancers. 

We're all dying of something, eventually. For my part, I'm just not going to sweat this "breast cancer." thing. When my 2cm tumor was cut out, with huge margins. I was done.

Good enough, for me. 

On, to enjoying, the day!

mdb

lol

Natsfan wrote:

"He concluded by saying that he wasn't going to post any more because we were essentially too emotional to be educated about using logic and facts.  It was basically a rehashing of the old sexist line that I used to hear early in my career about how women weren't fit to be police officers, fire fighters, corporate officers, astronauts, etc. because we were too emotional and incapable of making logical decisions.   It was so incredibly offensive and condescending that it got to me and I fired off my rather hot post."

I appreciate the update! What I think, is one of the things, you said. i.e "the guy made the decision for his wife to get rads over her objections and is now desperately trying to justify it."

I shudder, to think of their relationship. Although, I do wish her, well. Too bad that she never got a chance, to speak. 

As I've said, WAY above, in this thread, to Worried Hubby. Would he do the same treatments, if HE was diagnosed, with Prostate Cancer? 

He didn't really, answer.

But that's another cancer, that men can live their whole lives with. And it will never cause, their death. Yet, if they do find it, the medical industrrial complex treats the shit out of it. 

Surgeries, radiation, blah blah, and the man ends up either incontient or impotent, or both. But oh, "we got EVERY SINGLE CANCER CELL."

When the cancer was low grade, and was NEVER life threatening. 

And that's the same thing, with DCIS. Sorry, DCIS is NOT cancer. It's not. It's a pre-cancer. But if you get your mammos, your maybe, potential, cancer, will be caught, in time.

Worried Hubby, wasn't too interested, in my prostate cancer comments. Because THAT affected, HIM.  He got all emotional, about that. He wasn't going to do THAT.

Have prostate cancer surgery, Perhaps rendering himself incontient and impotent to take out every cancer cell. If he ever got prostate cancer. While he's dictating to his wife, she should do all of this crap to her breasts.

He commented on that, above, but maybe he deleted that message, too. 

SherriM, no problem. 

I do wish this board went from the latest message, to the last. Instead of the opposite. 

But thank you, for your support, Sherri. 

This is all ... SO hard. For my part, it's only been, two years,  since my breast cancer surgery.

But truly, I'm just great. Without ANY of these ... "treatments." The radiation and the drugs. To repeat, negative mammos, blah blah. 

There IS another choice. To you women, out there. With early stage, breast cancer. 

QUESTION radiation OR hormone therapy for early stage (2cm or less) HR+/ER+, HER- breast cancer that is suggested,to you. 

Find out, how it will help, YOU. 

And then, make your own, decison.

mdb

Oops, the table did not paste.  For anyone who is interested here is the link:

http://www.bcconnections.org/wiki/Making_the_Decision._Breast-Conserving_Therapy_Versus_Mastectomy

This article was printed in 2006 and I recall reading it.  This is something to consider along with the fact grade of cancer may be progressive, from DCIS to IDC, from grade 1 then 2 and then 3 and then necrosis which is what I concluded is bound to make the tumor cells more aggressive in spreading.  It is a hard reality to be dx'ed with early stage breast cancer and then conclude surgical removal of the tumor with wide clear margins is enough medical intervention to allow you to confidently continue your life uninterrupted by the dx ever again.  It's compounded, your age, children who need a mother, would you be able to look at their little faces on your death bed, after having refusing rad therapy at dx and not realize that it would have been a safeguard.  Are the side effects of treatment as difficult to tolerate as loss of life?  It is a hard call.  Personal one and that "advising every woman reading this thread to question radiation therapy" is a statemen that no woman in her right mind would made who doesn't have a medical degree and years of professionally based research under her belt that includes clinical trial results and perhaps a few publications on the subject available on a book shelf at Noble's Book store.

ScienceDaily (Oct. 12, 2006) - Almost all tumor cells found in the bone marrow of early stage breast cancer patients appear to be breast cancer stem cells, suggesting the risk of disease spread for all breast cancer patients may be greater than previously thought, according to a ground-breaking study by Richard J. Cote, professor of pathology and urology at the Keck School of Medicine of the University of Southern California (USC).

See also: Health & Medicine

• Stem Cells
• Brain Tumor
• Leukemia
• Cancer
• Prostate Cancer
• Lung Cancer

Reference

• Metastasis
• Tumor
• Embryonic stem cell
• Natural killer cell

"Most Early Disseminated Cancer Cells Detected in Bone Marrow of Breast Cancer Patients Have a Putative Breast Cancer Stem Cell Phenotype" which appears in this week's issue of Clinical Cancer Research, provides the first evidence of the putative stem/progenitor cells within tumor cells collected from the bone marrow.

Stem cells are a type of cell in breast tumors that are believed to seed the growth of new cancers. These cells are only a small part of the vast number of cells within tumors, but they can act like adult stem cells - a basic cell that can grow into different types of specialized cells.

Much current research has focused on the theory that it is these stem cells landing in a distant site that creates metastases, and not simply single cells that detach from the primary tumor and travel to another part of the body.

Although disseminated tumor cells, either in the bone marrow or lymph nodes, are already regarded as a prerequisite for relapse and metastasis, no studies have as yet examined these cells for the existence of the stem cell phenotype.

"The primary implication is that it is the stem cell population in cancers that are presumed to be the only cells capable of forming metastases," said Cote. "Metastasis is the most important event for determining outcome in cancer patients."

In the study, Cote and colleagues looked at 50 bone marrow specimens from women whose breast cancer was caught in its earliest stages, but in whom tumor cells were detected in the bone marrow. Using a newly developed immunohistochemical protocol, Cote and colleagues found the tumor cells from all patients contained a population of putative stem cells.

The presence of CD44 protein with the absence of CD24 protein defines the stem cell population of tumor cells. Only a small proportion of tumor cells at the primary tumor site in the breast have been shown to have the stem cell characteristics. It has been shown that only the stem cells have the ability to form metastases in experimental models.

What was surprising to Cote and his colleagues, who anticipated some stem cells within the disseminated tumor cells, was that the majority of the remote tumor cells have the stem cell characteristics, and that they appeared in the bone marrow of breast cancer patients whose disease was caught in the earliest stages.

"We know that the presence of disseminated tumor cells in the bone marrow is a bad feature, as it is an indicator of future metastases, but we didn't know if these were the cells that actually cause disease progression," said Cote. "This data suggest that the vast majority of patients with disseminated tumor cells may have a life-time risk for relapse. We definitely need to pursue molecular studies of these putative stem cells."

The study was funded by a grant from the National Cancer Institute.

Reference: Marija Balic, Henry Lin, Lillian Young, Debra Hawes, Armando Giuliano, George McNamara, Ram H. Data, Richard J. Cote, "Most Early Disseminated Cancer Cells Detected in Bone Marrow of Breast Cancer Patients Have a Putative Breast Cancer Stem Cell Phenotype," Clinical Cancer Research, October 1, 2006, Volume 12, Num 19, 5615-5621.

LynninCalif,  you said - "... grade of cancer may be progressive, from DCIS to IDC, from grade 1 then 2 and then 3 and then necrosis which is what I concluded is bound to make the tumor cells more aggressive in spreading." 

That may be true about some types of cancer but as far as I know, that's not the way it works with breast cancer.  Breast cancer that starts out as low grade DCIS  might eventially become low grade IDC, but it's never going to turn into a breast cancer that's high grade. Low grade DCIS ONLY has the genetic capacity to progress to low grade IDC and likewise with high grade DCIS. So, someone with a low grade DCIS or IDC (all grade 1's and some grade 2's) really doesn't have to worry that it might someday progress to a more potentially lethal grade 3... it just doesn't happen that way.

Had to laugh yesterday - in the Washington Post's Book World section, one of the books reviewed was "Gut Feelings: The Intelligence of the Unconscious".  The author, Gerd Gigerenzer, according to the review, "uses numerous examples, from medical diagnoses  to the logistics of catching a fly ball, to make the case that 'intuition is the steering wheel through life'."  I guess WorriedHubby won't be buying that book any time soon!

We all need to follow our own gut feelings, intuition, flashes of insight, whatever you want to call it, when making treatment decisions.  That means that two people with exactly the same profile might make two different decisions, and each one would be right for that particular person.  I think we can have a good discussion and raise issues for thought, but we cannot  and should not judge each other's eventual decisions. 

Very tragic.  I remember I asked for a mammogram when I was 35 years old.  The doctor told me "Oh, you dont need mammograms until you are 40."  Went on to get invasive breast cancer when I was 40.  Thinkin my gut was talking to me then. I have since changed doctors.

Nets Fan, why bother going to the doctor at all.  Just rely on that "women's intutiion".  After all, you're a lawyer so you are smart enough to diagnose yourself and treat yourself.  Good luck :-)

I know this thread started with lumpectomy and rads - but I have been reading & researching untill I am numb - I had bi-mast June - 3rd -  2 tumor boards  (Houston area) were on the line about my rads - less than 1 mm margins with a a little microinvastion after mast. The majority voted after looking at my slides (not just the path test from 2 different labs) that I should have rads because of grade 3 and size of tumor with necrosis etc..  The Rad nurse called me today to see why I was not scheduled in Aug.  I told her a set back infection - had to have surgery expander removed and replaced in July and had to fully heal.  My breast oncol. told me ok to post pone a 2-4 weeks to try to stretch my surgery side out before rads. I am really getting cold feet!!  I am really looking to someone that has been through this issue with risks of radiation - how you decided case outweighed the benefits of rads?   I am finding more infor. about the long term effect  rads everyday - not to mention my risk of losing implants later.  Vs.  the reacur. of cancer at old mast. area.  I understand this is opinion only and everyone is different but any one out there with mastectomy and rads with expanders & implants??  I have only found 1 person so far on the board that still has her implants.   Any help would be appreciated.  Holly

mdb--I was diagnosed via MRI, on an educated "hunch" of my male radiologist (note to worriedhubby).  My tumor was not seen on mammogram, whether because I have dense breast tissue, (which makes it hard to see tumors on mammogram, digital or otherwise) or because it was so close to my chest wall, I'm not sure. I was shocked to find out that a full 30% of all bc is not seen on mammogram!  Mine turned out to be IDC, but the initial needle biopsy showed ILC, and I learned that ILC is notorious for not being seen on mammogram and usually can't be felt until it's large, which usually means a later stage.   Soooooo, between the problem of dense breast tissue and ILC, and a multitude of other factors, it's really not always as simple as waiting for bc to show up and having it cut out.  30% is a huge number, when you stop and think about it.

And BTW, Breast MRI's are great, but few, if any, insurance companies pay for routine breast MRI's.  Had I not had a steriotactic biopsy showing Atypical Lobular Hyperplasia in a different area of my breast, my insurance wouldn't have paid for mine, and I would still have an IDC tumor growing on my chest wall that didn't show up on mammogram!  This is a sobering thought and weighs heavily on my decision to go through chemo and radiation.  

worriedhubby--I made a special note of pointing out in my first post that men have intuition too, they just don't listen to it as much, and often scoff at it (case in point!)  No one on this thread has said a word about making decisions based solely on women's intuition...you seem to have deliberately twisted what has been written....why are you still here?  You obviously don't like us.