Informal Poll re: radiation and recurrence

SISKimberly

Informal Poll re: radiation and recurrence

SISKimberly

Hi,

I posted this question on the recurrence thread, and it was suggested by a member that I post it here as well.

I'm trying to prepare for deciding whether or not to do radiation after chemo.  I went onto the American Cancer Society website and used their Treatment Tools.  After typing in your dx based on path report you can get info regarding treatment options and also research based on your dx.  I looked at all the treatment options and the side effects.  I have already had a bilateral mastectomy and will be done with chemo (1 round every 21 days x 6 of Taxotere, Adriamycin, and Cytoxan) at the end of April.  I looked at the research for mastectomy alone vs mastectomy and rads.  6 of the studies I read all seem to point to no signicant difference in overall survival rate between the two groups.  One 20 year study stated that @13% of mastectomy only patients died in that 20 year span of breast cancer.  The kicker was that @ 21% of the patients with mastectomy and rads died of radiation related causes, not breast cancer.  The conclusion was that the insignificant benefit was not worth the toxicity to the rest of the body that radiation would cause.   That woke me up.

So, I just want to get an idea about how many of you gals chose to do rads or not, and what went into your decision process.  I have no intentions of basing my decision soley on this little poll, but I want to hear from those of you living it what your experience has been.

I want to be able to ask my oncologist to give me the specific reasons why, based on my path report and the things already done,why I'm being asked to do radiation in the face of the studies I read and the experience of women living it.   If he can convince me that radiation is the right thing for me based on my pathology, OK, but because I was told, even before my surgery and final path report, that I WOULD have radiation,which changed my reconstruction plans, I'm not so sure it's me the patient or the 'way we do it' that is being considered first and foremost.   How can that be a forgone conclusion without all of the information?

Thank you in advance for listening and contributing to this conversation.

SIS(Sister In Survival)

Kimberly

abbadoodles

Kimberly, I had a lumpectomy and rads 16 years ago and still had a local (in the same breast) recurrence a couple of years ago.  At least, it was another tumor.  I'm told there is no way to know if it was a recurrence or an entirely different tumor.

I never had any big problems with rads, ie. burns, anemia, etc.  Still, in retrospect, hindsight being what it is, I would opt for a mastectomy and no rads if I had to do it over again.

Tina

SISKimberly

Tina,

Thanks for responding. Can you  give me some info about your type of cancer, stage, and lymph node involvement? Did you do chemo? HT?  Hope all is well with this recurrence being NED. How was that one treated?  Sorry for all the questions....I just think having lots of information is essential to making tough decisions.

SIS Kimberly 

caaclark

Kimberly,

I had a mast. following chemo and then rads was at the end.  I think with positive lymph nodes they highly recommend radiation.  I would do it again given the chance.  Even if it gives me just one more % difference it is worth it to me.

NarberthMom

The other thing to realize about the old radiation data is that radiation treatment has greatly improved over the past 20 years. They now use CT scans to pinpoint the radiation field. There is much less damage to surrounding organs.



You might want to have a consult with the radiation oncologist to get more exact information.

trigeek

Kimberly ,

I researched to the point of delirium on this subject, and as I can see I think you got an axillary node dissection and 4/10 nodes tested + right ? Which makes you waltzing at the 'wonderful' grey area like me which is not fun.

The website tools take the following criteria, > 4 nodes you get rads even with mastectomy with clear margins.

There are other factors involved such as lymphatic vascularinvolvement.. , or the tumor being multifocal( which was my case)

I consulted at least 12 doctors and at the end arrived to the decision that I would not get axillary node dissection because I would like to get radiation anyways to seal the deal. My oncologist wanted me to get the axillary node dissection and then if no other nodes tested + skip the rads I was not comfortable with it as I saw a lot of studies showing that rads with mastectomy with patients having >4 nodes was very beneficial. 

The way the radiation oncologist explained the situation was that, lymph nodes capture the cancer cells , thats their job. Now this means that c cells actually did move out from the tumor towards the body. Taking out the lymph nodes could be part of the therapy but who is there to guarantee that the lymph channels and the lymph nodes that are not taken ( levels 3 and 4 ) do not harbor c cells ? Radiation is supposed to take care of micromets in those areas.

So I stopped at sentinel node biopsy did not agree to get the axillary node dissection and started full blown rads and am very comfortable with my decision.

Here are some of the links that I checked when I was making a decision of choosing between having an axillary node dissection and radiation ( those were my choices )

http://www.dcmsonline.org/jax-medicine/1998journals/march98/RadiationTherapy.htm

http://www.cancer.gov/clinicaltrials/results/additional-radiation0205

http://patient.cancerconsultants.com/CancerTreatment_Breast_Cancer.aspx?LinkId=53880

http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Radiation_Helps_Survival_After_Mastectomy_and_Chemotherapy.asp

http://www.breastcancer.org/treatment/radiation/when_appropriate.jsp

http://www.unc.edu/news/archives/oct05/masectomy101005.htm

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VHS-47S52FH-6&_user=10&_coverDate=02/28%

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VHS-47S52FH-6&_user=10&_coverDate=02/28/2003&_rdoc=1&_fmt=summary&_orig=browse&_cdi=6074&_sort=d&_docanchor=&view=c&_ct=1&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=25e759b9dd1a901c2e6da4c4d5610a52


http://www.ro-journal.com/content/2/1/40

http://www.medscape.com/viewarticle/431672

http://xnet.kp.org/permanentejournal/spring07/enough.html

http://www.medhelp.org/forums/BreastCancer/messages/1265.html

http://jco.ascopubs.org/cgi/content/full/17/1/143

http://www.medscape.com/viewarticle/412495

http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=34&abstractID=34038#

http://jco.ascopubs.org/cgi/content/full/17/5/1465
http://jco.ascopubs.org/cgi/content/full/17/5/1465

http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=34&abstractID=34038#


http://www.annalssurgicaloncology.org/cgi/content/abstract/5/2/131


http://www.breastcancerupdate.com/miami-conference/2005/MBCC05_Poster22.pdf

http://books.google.com/books?id=op7lm69RypkC&pg=PA291&lpg=PA291&dq=axillary+node+dissection+versus+radiation+breast+cancer&source=web&ots=-00Gl02sMT&sig=8g2H-CVDdEVlnOmadFMTCLemI98#PPA291,M1 ???? -- from the book :
Breast Cancer: A Guide to Detection and Multidisciplinary Therapy


http://www.bccancer.bc.ca/NR/rdonlyres/16B06932-272E-4467-B4A6-6BD6A8EB4913/19788/NDavisAxillaryStaginginBreastCancer.pdf

http://www.cfpc.ca/cfp/2002/Jun/vol48-jun-cme-1.asp

http://www.cmaj.ca/cgi/content/full/170/8/1263
 

Good luck !  

abbadoodles

Kimberly, 16 years ago I had a 1.1 cm tumor, slightly/questionably hormone +, LND 10 or 11 nodes and all clear.  This time around the tumor was just over 2 cm, weakly PR+, only two axillary nodes left and they were needle biopsied (if that's the term) under ultrasound and then a lymphosyntigraphy (sp?) the day before surgery and then found with geiger counter and visually inspected during surgery.  Phew!  They didn't want to remove them for fear of LE.  The verdict was that they were negative.  So, I had a mastectomy followed by 4 DD A/C.  Radiation was offered but not pressed.  It would have been a quality of life issue and didn't seem to offer any significant advantage.

The way I feel is that if I'd had a mastectomy all those years ago, there would have been no issue recently.  Oh, well.  Cannot change the past.  But it is something to consider for people just starting on this so-called journey.  Hope that helps.

Tina

marshakb

Kimberly,

I was in the gray zone for rads also.  I was told from the beginning I did not need rads.  5 cm lobular, clear margins, 1 micro node out of 13 taken.  I did 4 A/C and 4 taxol.  Thinking I was done, the "you now need rads" came as a big surprise.  I met the rads onc and he said I needed it from the very beginning.  Mine was based on the size of the tumor not the micro node.  He described it as a "sanitizer" to clean up in stray cells that might still be lurking around.  As soon as he said that, I was OK with it.  I liked the idea of sanitizing the tumor area, nodes and also the supraclavical. 

I did everything I could possibly do!  Single mast, chemo, 33 rads then back in to have the "good" breast removed.  I feel pretty good about that.  And better yet, I sleep fairly well too knowing I threw the kitchen sink at it!!  Good luck to you, Marsha

SISKimberly

Thank you all (Carol, Narberthmom, Trigeek, Tina, and Marsha) for sharing your experiences.   

Tina- I'm so glad all is well now. Thank you for the clarifying info.

Trigeek- I will be looking at those research posts you listed. Thanks.

SIS Kimberly