Radiation necessary in an early stage cancer

I've been reading this thread today and felt I should jump in.

When I was 29 (I am now 49), I grew (literally overnight) a grapefruit sized tumor on the right side of my neck. Diagnosed as an undifferentiated malignant carcinoma. Had 7 weeks of rads and and boosts, started chemo at the same time (5FU and cisplatin). Had to have a 5 day 24/7 infusion of chemo every 4 weeks for 6 months. Anticipated life expectancy after that was 5 - 10 years.

In 2004, I grew a malignant sarcoma in my right shoulder area, had surgery to remove. In 2005, grew 2 malignant sarcomas (each the size of an egg), same area, had them surgically removed as well as ps to move muscle from left side to right so the surgeon could close me up. There wasn't enough muscle left on the right side after all this. In 2006, grew another malignant sarcoma (small) and had a hole in my back because my scapula bone had broken through. So, another surgery to remove tumor, trim scapula, and debride the area.

The surgeon I have is the chief of orthopedic oncology at Beth Israel Deaconess in Boston. He and the tumor board felt that these tumors could have been a post radiation result. Could not say 100% because no one lived longer than 5 -10 years after having what I had when I was 29.

A few months ago, I was diagnosed with bc, left side, IDC. I've had two surgeries, first to remove lump, second for clear margin and SNB. Results are negative on the SN and margins are clear. My tumor was very small < 1cm. BS recommended rads or mastectomy. I wasn't doing either.

Met with rad onco and reviewed current pathology and prior treatment 20 years ago. We discussed all options and % of reocurrences. We also discussed the possible post rad effects - damage to heart, lung, chest wall. Studies have shown that some women that have been exposed to large amounts of radiation while younger can be suseptible to bc. Hello ----- The rad onco said that my left side was well shielded when I received rads 20 years ago, BUT it was possible some made it through to the left side. BTW - there is no history of BC in my family. He was in agreement with my decision not to do rads, but start tamoxifen. He also said that if an older woman 65+ was presented with my dx, he would most likely not recommend rads, just tamoxifen or similar hormone treatment therapy.

I am very comfortable with my decision not to do rads. I have not started tamoxifen yet. Not too thrilled to have that bit of fun added to my life right now. I am scheduled for a 2nd opinion at Dana Farber in Boston this week. I want a 'new' set of eyes to review my entire history and hear their opinion. Up until now, I have always gone to Beth Israel Deaconess in Boston.

So, what I'm trying to say here is that every woman is different and each woman's life choices must be respected.

Rafaela

Yay Rafaela, thank you.

Thank you, Summer...It just goes to show you that everyone is allowed to make her own decision regarding any treatments....The freedom to do so is really important.  That's why it is also important to remain unjudgemental..and I think we do that.....It is OK to disagree..but we must always treat each other with the utmost respect.

Sandy

To: louishenry and MarieKelly:

Thank you! For thinking, of me. Yeah, the great, totally clear, CT news was just that .... GREAT.  And this, coming off of my Bi-Rad 1 mammo, on both breasts, May, 2008. After the breast cancer in the right breast, August, 2006, and the suspected cancer in my left breast, August, 2007. That latter, ended up with a October, surgical exicsional biopsy that found, nothing. The original diagnosis had been ADH. The results of the exicsional biopsy ... it was all, nothing. No cancer.

But you know what the good thing about this all, is? All of my many cancer diagnoses, threats. 

By now, I truly just live, for today. I do. Life is Good! 

I do, stop and smell the flowers. Literally. And more so, than ever, I'm enjoying, my children. They're both such wonderful people, and we spend a lot of time, together. My daughter is 19 and my son is 16. And my job is really stressful, but I don't take the stress, home. I leave it, at the office. 

Having had all of these cancers, has perhaps, given me a better life.  Because I do enjoy life, so much more, now. When now, I know, how quickly, it can be taken, away.

There's no time, to waste. Enjoy life. Now. 

And THAT is why I don't want to do, to me, what I consider are suspect "treatments."  As MarieKelly said, there will come a day, when the docs will all say, "What WERE we recommending?" "That's just, nonsense." 

For my part, I'm just enjoying LIFE! No treatments, no side effects, negative scans. 

Life is, just one day, at a time. And I'm taking each day and every day. 

Yet still knowing ... tomorrow, I could get pancreatic cancer. Or whatever, ailment.

We're all dying, of something. Eventually. I'm just going to live, in the meantime! And not make myself, sick, trying to stay alive. ...

hi everyone......have had my surgery to remove cancer.......the results r stage 1 no lymph nodes involved,,,,,,but the margins 1mm......I am 62...my question is ......should I have radition

Ruthie,

A 1 mm margin is pretty tiny. Sometimes it helps to actually visualize just exactly how minimal 1 mm really is. See the following link for a millimeter ruler -

http://www.earthstreasure.com/Info/Millimeter-Inch.html

Was there any discussion with you and your doctor(s) about going back in surgically and attempting to widen the margin?  I'm one who tends to feel radiaton can be avoided in many cases but honestly, just 1 little millimeter would make even someone like me very uneasy about not doing radiation unless the margins were significantly wider. What kind of cancer did you have? What size and grade was the cancer? Any vascular invasion? Lot of other things to consider other than just margin width - though margin width is definately is a major consideration.

Ruthie, wth all due respect to the other posters on this board, you are asking for very significant medical advice from those who are not possibly qualified to give it.  This thread has a number of studies posted, as well as personal experiences, that will give you the ins and outs of radiation, but the bottom line is if you had a lumbectomy radiation is the standard of care, and there are quite a few studies showing that radiation is of significant benefit.  Without radiation you have a significantly greater chance of local recurrence, and I posted a study a page or two back that showed after fifteen years, those without radiation were more likely to die from breast cancer than those who had it.  So the real question is why would you conisider not having radiation???  Now if you had a mastectomy, the answer is not always as clear as with lumpectomy;

Parenthetically, even if there was a radiation oncologist on board, eventhey couldn't give you legitimate advice without reading your medical records and possibly doing a clinical examination. 

Ruthie,

Radiation is given for control of local disease - cancer in the breast or the immediate area surrounding the breast. It does nothing to control a horse that's already left the gate. The things you need to know about your cancer before you even begin to entertain a thought about whether or not radiation is needed in YOUR specific situation are the following -

1) the type of cancer; invasive ductal, DCIS, Lobular, LCIS, etc etc.

2) the grade of the cancer; grade 1(well -differentiated), grade 2 (moderately differentiated, grade 3 (poorly or undifferentiated). Grade 1 is preferable and prognostically the more favorable one to have and least likely to reoccur.

3) the margin width - best is greater than 10mm or 1 cm. The bigger the better when shooting for no recurrence with a lumpectomy.  Margins that have been cut through raise the highest risk of recurrence, followed by those that required a second surgery to clear. Wide clear margins on the first pass have the least risk of recurrence. It's my understanding that many rad oncs won't even do the radiation until there's been an acceptibly clear margin obtained - assuming of course, that's it possible to do.

4) HER 2 status - negative, positive or equivocal? Her 2 negative is best. Her 2 positive is a more aggresive cancer and thus more likely to reoccur.

5) vascular invasion - present or absent? The presence of vascular invasion indicates a higher probability that the cancer has traveled to other areas of the body via the circulation. No vascular invasion is better.

6) node status - positive or negative. If positive,how many  positive and was it macro or micro invasive?  With a mastectomy 4 or more nodes positive gets you a recomendation for radiation. With a lumpectomy, any positive nodes will usually get a recommendation of radiation to the node area. Obviously, node negative is always prognostically preferable when deciding on radiation or not after lumpectomy.

7)Stage of the cancer - stage 1, stage 2, stage 3, stage 4?? Stage 1 and some stage 2 are considered early cancer. It's always more prognostically favorable to have an early stage cancer. Stage 1 is the most prefered.

8) Your age - older women (menopause and beyond) are the most likely to have a non-aggressive cancer and so also less likely to suffer a recurrence. Older is always better when dealing with breast cancer.

Radiation is almost always advised for any invasive breast cancer because it's currently the standard of care. Some women, after weighing all the pros and cons, make a decision to decline it. Other than to help guide you through the information you need to know in order to make an informed decision about it, nobody here can advise you whether or not to have radiation. You have to make that decision completely on your own after gathering all the information, weighing it as it applies to yourself and  then discussing it with your doctors.  

Mariekelly, her question was this:  

hi everyone......have had my surgery to remove cancer.......the results r stage 1 no lymph nodes involved,,,,,,but the margins 1mm......I am 62...my question is ......should I have radition\

I don't know how much more directly somebody can be asking for medical advice then this particular question.  She is not asking what lotions she should apply to avoid burns, she is asking the most fundamental question of whether she should have radiation or not.  Now I am not suggesting you or others have actually given medical advice, but some of the responses to questions like this become very close and the fact is that some people may choose to avoid radiation.based on some of the statements in this thread.  That could end up being a tragedy for those people should they have a recurrence that spreads.  The proper answer to any question like this is of course that it is not proven that radiation will benefit all people but that it is impossible, at this point to know who it will not benefit, so from a prophylactic point of view, every lumpectomy patient out there  should have radiation.  But I am not hearing that answer. I'm hearing things like "it depends on your individual situation and its up to you"/  Of course it is,  Every adult has the choice to consent or not to medical treatment.  But to suggest to people who are frightened and not very knowledgeable that they can make a reasoned determination to avoid radiation, especially when nobody here could possibly know what is best for any individual or not, is simply WRONG.

WorriedHubby,

Someone asking a question such as "should I do radiation?" on a forum like this one is NOT asking for medical advice....they are asking for the personal opinion of other breast cancer patients. Medical advise is something that's delivered by a physician, and you apparently don't understand the difference. 

If there are some who make a decision to decline radiation after lumpectomy ( or any other decision about treatment for that matter) because of what they read on this forum, then that's THEIR decision and their right to do so. Personally, I don't think it's your place to attempt to censor what people should or shouldn't be reading about, nor to decide what the "proper answer" should be regarding any discussions here.

Maria, I apologize for the oversight . Having cardiac issues myself (valvular heart disease) and that being one of the reasons I refused radiation, I truly do understand your concern about being radiated to the left side. That said however,  I still think you're between a rock and a hard place here regarding questioning the need for radiation in light of having those 4 positive nodes - although I think the hard place is a teeny bit softer now that I realize you're not also dealing with a postive mastectomy margin. 

There's been much controversy for many years (literally decades) regarding post mastectomy radiation with positive nodes and it still continues to this day. Currently the standard of care is to radiate anyone with 4 or more positive nodes and the most recent 2008 guidlines from the NCCN now also strongly recommend that it be considered for those with 1-3 nodes as well. http://www.nccn.org/professionals/meetings/13thannual/highlights/1324.html

I've collected some information in the following links for you to review. It's a very difficult decision, especially with the additional cardiac concerns you have. My suggestion would be for you to get multiple opinions from different, independent radiation oncologists and then weigh all the pros and cons very carefully once you've heard what they all have to say about your concerns.

Ann Oncol. 2007 Aug;18(8):1342-7. Links

MarieKelly, thanks for the links and your input.

Wow. What a comment, Worried Hubby. You sound like an elitist. YOU know, what's best for everyone.  And that is the woman totally trusting in whatever doctor that she happens to visit, in her local area. And I guess, for you, the "standard of care" is KING.

I guess I just don't understand why what I am saying is over your head? Adhominem attacks against me do not change one iota the absolute fact that you are in no position to give medical advice to anybody, especially given your cynical opinion that the medical community foists radiation on women only for the money and not because it believes radiation benefits outweigh the costs and risks..  What you elected to do or why you elected to do something has no possible relevance to whether another person should choose to have radiation or not.  You have no knowledge of the persons individual tumor characteristics, have never performed a clinical examination of the poster, have not reviewed the poster's medical records and probably have just enough knowledge about radiation and breast cancer to be dangerous. It is clear from your posts that you are anti-radiation and are trying to influence others to avoid it. I can't believe you think its okay that people should simply risk another recurrence of cancer in their breast as if that is no big deal simply because you think it is no big deal.  I write on this thread because I am amazed there are people like you saying what you do and the other "nice" women around here don't want to challenge you, even though many of them probably think you are totally wrong and maybe somewat of a nut.  I am doing my best to warn others here that they should take what you say with a grain of salt.  Whether they do or not is up to them.  And, by the way, I posted a study up above that says survivability is worse without radiation.  That only makes sense since a certain percentage of people who have a recurrence of breast cancer in their breast are going to metastasis.  Otherwise, breast cancer would never kill anyone.

worriedhubby -

This is a forum to share information and provide support for women all over the world with breast cancer. Yes, you have shared information, BUT certainly not in a caring fashion.

These boards are all about care, support, and love for women experiencing breast cancer. Have you read any books about what it means to women that are diagnosed with breast cancer? Your postings tend to be copies of various articles you've found on the web, all very clinical in nature. I'd like to see you learn more about the emotional side of what these women are facing, then post back to us.

If my husband was like you, he wouldn't be my husband much longer.

I have posted this before and will say again --

Every woman is different and HER life's choices should be respected and supported.

Rafaela

First Mdb, I do not trust the radiologists to properly interpret the scans, one reason I would worry about a recurrence to begin with, because it could in fact metastatise before it is detected. That's totally different from a radiation oncologist who does not interpret images, but plans for and administers radiation.  You think because you have clean margins that there is no risk of a recurrence?  Then why do so many women with clean margins undergo radiation?  And why do some of them have recurrences. 

By asking why my wife did not have a double mastectomy, you still don't get it..  Its not about assuming some risk.  Its about assuming unreasonable risks.   There is significant risk of a non-radiated breast having a recurrence of breast cancer.  The risk of not having radiation is geometrically greater than the risk of having radiation.  Your sticking your head in the sand and denying the science in no way changes the facts.  And every recurrence means additonal risk of metastasis.  I don't see how this simple statement can be denied.