Topic: No radiation--5 years clear!

Forum: Radiation Therapy - Before, During, and After — What to expect from treatment and ways to cope with side effects.

Posted on: Jul 10, 2008 08:37PM

Posted on: Jul 10, 2008 08:37PM

wiscpat wrote:

I was diagnosed with IDC in July 03, 6mm, lumpectomy with clear margins, no nodes involved, non-aggressive pathology 3/9 on Nottingham scale.  Age 60, postmenopausal, ER/PR+

My oncologist ASSUMED I would have radiation.  After a LOT of research and discussions with 3 different radiologists, I chose to skip it.  Would I recommend that for everyone?  No, it depends on YOUR specific factors and comfort level.  Age and the aggressive level of the tumor weigh heavily.  No tamoxifen either.  I have just had my 5 yr. clear mammogram and lab tests....no sign of further involvement.  Marie and I have been corresponding annually for over 4 years.  I wish WE had been in a research study!  Perhaps they could find the factors which would allow more women to avoid the radiation and tamoxifen route.

 Best wishes to all of you, especially those wrestling with this question. 

Dx 7/2003, IDC, <1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 10, 2008 08:42PM easyquilts wrote:

Wisat....Congratulations!  What wonderful news....I know the decision you made was not an easy one, and am so glad it has worked out well for you.  

Sandy

Sandy from Cincinanti....AKA Kermit Dx 5/21/2008, DCIS, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Jul 11, 2008 06:38PM ginger2345 wrote:

Congrats on 5 years. Sounds like you are one of those that rads and tamox wouldn't have helped. We know statistically that that is the case; it's nice to have a name to go with that stat.Smile
Ginger Dx 11/1/2004, DCIS Dx 9/5/2012, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 12, 2008 08:34AM Dejaboo wrote:

Wonderful to hear!   Congratulations!

Pam

statistics are just a group of numbers looking for an argument Dx 3/7/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2+
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Jul 12, 2008 09:58AM - edited Aug 15, 2008 08:29PM by worriedhubby

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Jul 12, 2008 10:45AM NatsFan wrote:

worriedhubby - why would someone accept a small risk of recurrence? 

In my case, there is absolutely no survival benefit to radiation.  Once you take survival benefit off the table, then it becomes a quality of life issue. 

If I have a recurrence, then my quality of life will be affected negatively as I will have to go through all these treatments again.  If I have radiation, my quality of life will be affected not only by the s/e of the actual radiation process (fatigue, skin problems, plus the actual time involved in going every day for 6 weeks), but the possible s/e I'd have to live with after radiation, including the big one, lymphedema.  In my case, I'm at a very low risk of recurrence, which means I'd get a low benefit from radiation. However, since I've had a mast with full Level I/II AND, I'm at a relatively high risk for LE. 

Balancing the low risk for recurrence if I do nothing against the certain s/es of the actual radiation process and the high risk of LE, I decided that I had the best probability of a better quality of life by forgoing radiation.  If I recur, so be it.  Many women who opt for radiation also recur. Different women will make different decisions on this, and I would never presume to judge someone because they make a different decision than I would make.

You could virtually eliminate locoregional recurrence by doing a procedure that was done in the 50's that was called a super-radical mastectomy, in which not only was a full Halstead done (removal of breast, chest wall, and Level I/II lymph nodes) but the subclavical and intramammary nodes were removed as well (done by cracking open the sternum). This was done even for node-negative women.  At that time, many doctors couldn't understand why "anybody would accept the risks" of recurrence (to use your words) by not doing the super-radical.  Yes, it virtually eliminated the risk of recurrence.  Also, one in 7 women died during the surgery, and those who survived were crippled for life. At that time, super-radicals were accepted medical practice even for node-negative women.  Today, it's malpractice, as the costs to the patient's survival and subsequent quality of life are deemed far too high in proportion to the benefit gained.  

Lowering or completely eliminating the risks of recurrence come at a cost to the patient's quality of life.  In many cases, the benefit of those treatments are clear cut.  In others, the benefits are not as great.  It is up to the patient, and the patient only, to decide if the costs of those treatments are worth the benefits as she weighs her quality of life.   

Mary Dx 12/31/2007, IDC, 2cm, Stage IIB, Grade 3, 1/15 nodes, ER+/PR+, HER2-
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Jul 12, 2008 11:29AM - edited Aug 15, 2008 08:28PM by worriedhubby

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Jul 12, 2008 10:59PM wiscpat wrote:

Natsfan expressed my opinion very well.  I don't really believe doctors are in it for the money.  They cannot at this point determine with any certainty which women will have a recurrence.  There are, however, factors which lessen the risk: age, menopausal status, tumor size, nodes, aggressiveness of the tumor, etc.  I don't think doctors are discussin these factors with patients.  With lumpectomy and clear nodes, the survival rate as I recall is the same at 5 yrs. with or without the radiation.  With continued mammogram screening, I was very comfortable with my factors and proceeded without radiation.  Actually, I was sure it was gone....but I know I cannot prove that point!

Dx 7/2003, IDC, <1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 14, 2008 03:58PM MBoss wrote:

I am so glad to know that there are others who chose not to have radiation. Ofcourse, my situtation is a little different, I had mastectomy with 1+/13 nodes. I saw 2 rad onc, both rec no radiation. So I am not getting radiation. I was done chemo May29th.

NatsFan,from what I am reading you did not go for radiation, am I correct? I live in Michigan.

Thanks.

Dx 1/4/2008, IDC, 4cm, Stage IIA, Grade 2, 1/14 nodes, ER+/PR+, HER2-
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Jul 15, 2008 05:44PM zziggo wrote:

Thats wonderful news and I am very happy for you.

I was diagnosed with May 08, 1.4 mm, lumpectomy, no nodes involved, non-aggressive pathology Bloom-Richardson grade was a 2 .  Age 59, postmenopausal, ER/PR+.

My doctor did a biopsy and found the cancer, 2 week later he went back in to and removed more tissues and he removed 23 nodes. My nodes were negative for cancer but the Lab lost my tissue that he removed so he had no choice but to recommend a masectomy. I refused to have the masectomy so I am now on my 13th day of radiation. I am suppose to have 35.

They want me to take Femar, a hormone therapy drug for 5 to 10 years and I really don't want to take it. I really feel he got it all out but we have no proof and he says that is what surgeons rely on. I had clear margins on the sides when he did the biopsy but the ends were positive then neg then pos then neg, etc. and he went back in and took more tissue (that they lost) and it wasn't in my nodes. I thought thats why I was having rad, doesn't it kill any remaining cells that may still be there. I really don't want to take the meds. I had the Oncotype DX test and it came back at 12 which is low so Chemo was not recommended.

I had a meltdown today, I didn't want to get up, I was so tired, I just didn't feel good and boo-hooed all morning. I didn't go to work and have been home resting. My breast still hurts from the surgery as I had gotten an infection right after surgery so it was 6 weeks after the surgery that I started the radiation.

Did your breast hurt after surgery for a long time. My nipple hurts to touch and has since surgery so I know its not the rad. I only had it on the right side and it was found through routine mamogram, no lumps to feel. I tell everyone now, get your mamogram as I am thankful it was found early but this has been a very traumatic experience.

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Jul 15, 2008 08:59PM NatsFan wrote:

zziggo - I am so sorry!  What a terrible thing that they lost your breast tissue.  I don't blame you for having a meltdown.  We all have so many decisions we have to make, and now you're being expected to make decisions when you can't get all the facts.  Please take care of yourself the best you can - you're going through a lot now. 

MBoss - yes, I have decided to decline radiation.  The second rad onc went over everything with me, and in the end said since there was really no "right" decision in my case, I needed to trust my gut.  That's the same thing my PCP told me when I was deciding whether to try for a lumpectomy, mast, or bilat.  I did all my research then, too, and my gut said go for a bilat, and I've never regretted that decision, so I feel like trusting my gut feeling is the right way to go on this as well.  And you live in Michigan?  I was born in Battle Creek - sort of accidentally (long story) - but I grew up in the DC area.  I'd never been back to Battle Creek till a few years ago.  It was neat to be there - I found the house my parents lived in when I was born, and I even got to go in the hospital where I was born.  I love the Detroit Tigers ballpark - all the tiger statues were really cool and I even rode the Tiger merry-go-round.  Doesn't every 50+ year old ride merry-go-rounds?  Tongue out

Mary Dx 12/31/2007, IDC, 2cm, Stage IIB, Grade 3, 1/15 nodes, ER+/PR+, HER2-

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