Refusing radiation treatments?

Lorall, my pathology report says everything.  Percentage of ER and PR, node description of micromets, etc.  You should have a path report EVERY TIME they do surgery, biopsy or anything.  There is a report generated when they are examining not only tissue, but even a mammo.  Request them all so you can be informed.

kat526's last paragraph beautifully expresses my feelings as well. It is our bodies and there is no such thing as a crystal ball to tell us definitively what to do. We do the best that we can with the information available at the time and our own feelings about risk and tradeoffs (and I'm a statistician so I love data), and it is so very important to have good inner peace with whatever we decide. 

I did choose rads and am glad that I did, it was the right thing for me. I also opted out of tamoxifen and am glad that I did. These are such personal decisions, and my wish for those of you still deciding your course of treatment is for you to have the same inner peace that I have had since I began this stressful journey a little more than 3 years ago. Once my rads were over, my skin healed, and thankfully all future mammograms and ultrasounds to date have been normal. I take it one step at a time, no regrets.

Man, my head is spinning. I haven't even had my lumpectomy yet and I am already scared to death of the rads and the AI's. Do AI's (Femara, Aromasin etc) carry the same risks as Tamox? Yikes! Praying I make all of the right decisions when I get the final path and tx plan after my lumpectomy. A tx decison I can live with so that I am not looking over my shoulder every moment of every day. I will likely consult Dr. Laigos if the call is a close one. Radiation is serious business and like someone mentioned, I want it as an option later if necessary and/or if I have to have a mastectomy and reconstruction, I want the best possible outcome.

Really would appreciate if anyone has any insight into the AI's if those are prescribed for my ER+/PR+ diagnosis. Do they carry the same risks as Tamoxifen? If so, I pray I make the right decision about that tx too!

Gah, not in the mood for this Bullcrap. Wish it would just all go away! (I know, so stupid a comment..sorry)

oh yes, tamoxifin has more serious side effects than the ALs per my doc

Well, now Im really grateful i chose rad therapy as the SEs for AIs got so bad, im off of them.  

I had a lumpectomy in March and my BS wanted to pass me off to RO, but I did not want rads (after much research) since my pathology report showed no evidence of invasion and clear margins.  It is a hard decision to live with since no health professional will bless your decision to not have follow up therapy of some kind.  I am on 6 month mammo screening for now and wait and see.

thora902

About a year ago, I was on these boards constantly.  A core biopsy on March 15, 2012, showed I had Stage 0, grade 1, 9mm breast cancer.  Not knowing anything, I was going along with what the doctors said.  

After a lumpectomy, I was scheduled for mammosite partial breast internal radiation.  However, it was discovered that the space to be radiated was too close to the surface so I was disqualified.  

My surgeon did a re excision to get bigger margins, though the first lumpectomy was adequate. I had to take time to heal before 5 weeks of radiation could begin.  I took this time to educate myself.  

I tried to talk to the RO but they said to talk to him after the simulation where they get you all tatted up for the radiology treatment.  Finally, I got to talk to the RO.  He was very charming, funny and skilled making his argument why I should go ahead with rads.  I told him he should have been a lawyer.  

But by this time, I knew too much and had also consulted with Dr. Lagious.  I spoke to him for 30 minutes.  The upshot was because of my small low grade DCIS with big margins, and my age (76) I should fore go rads.  Since then I have had 2 followup mammograms and so far so good.  

My insurance said I had a partial mastectomy.  I have a big divot and about 25% of the volume of my breast is gone.  You don't notice it in my clothes.  It is a small price to pay.  I avoided rads that can cause heart, lung, thyroid problems, and the increased risk of skin cancer.

I don't recommend this for others as I still may be wrong, but it is what I did.  

Also, about the question of whether or not DCIS is cancer or not, the problem is with the definition of cancer.  Dictionaries define cancer as being invasive and DCIS is not, but it can become so.  I think the definition of cancer is wrong.  It should be defined as the unregulated growth of cells.

 Shayne

Hi Shayne.  I check in here every once in a while but I don't feel I have very much to offer anymore.  My post above pretty much says it all.  You and I started on this journey just about a year ago.

Life is odd, don't you think?  On May 22, 2011, we went to get Brady, my beautiful lab.  On the same day, the tornado struck Joplin MO killing over 160 people and started the forces that would bring Ginger to Michigan.  It was Brady's death that knocked me off concern for myself.  So things change.  I hope you are well and your family is well.  I'll be seeing you in the funny papers.

What became of Maize who started this blog?  I've just been diagnosed with DCIS stage 0 about 4 cm and having a lumpctomy this Friday. and a sentinal lobe.  Then I will have 30 radiation treatments.  Mine is estrogen positive so we will talk about what anti-hormonal drug to try.  All this discussion has been very helpful and I'm reading as much as I can find.  My faith is important to me and I believe will help me cope.  Thanks for sharing. 

Hi everyone! I used to be a regular at Breastcancer.org for many years and now only come around once in a great while. I may have already posted on this thread back when it first started, but I'm too lazy to go back and check, so I apologize if I'm repeating myself.  I refused radiation after a wide margin lumpectomy over 9 years ago and I also refused any hormonal therapy (tamoxifen or arimidex were both recommended).   I was already 9 months into in a fairly early natural menopause when I was diagnosed a week or so after my 49th birthday in 2004 with a single 1 cm tumor of  grade 1 DCIS mixed with grade 1 IDC (40/60% ratio). 

I realize that this post is in the DCIS forum and that I also had IDC, but I think it's important for those to whom it might apply to recognize that having a low grade tumor, even if there is an invasive component, doesn't necessarily mean you have to spend the rest of your life worrying about recurrence if you refuse radiation after lumpectomy. I rarely even think about it anymore except when it comes time for my yearly mammogram (which I recently had and it was negative again!). I wholeheartedly agree with the previous suggestion from Infobabe that those of you with low grade tumors who are contemplating refusing radiation should consult with Dr. Lagios. 

Best wishes to everyone!!

bjham,

You really need more info before anyone can tell you whether and how much radiation will reduce your chance of recurrence.  Many people on this forum consult Dr. Lagios.  He is the leading expert on DCIS.  He will look over your surgical pathology slides and call and talk with you by telephone.  Many women have been able to avoid radiation.  There are many things that factor in; your age, the size of your DCIS, grade, whether you have comedo type necrosis, and most importantly clear margins.

raspberry

Here is Dr. Lagios' web site. Read all the pages.  You are in New Zealand so I don't know how he handles international patients,  but it is worth a try.  I was amazed how expeditious the process was.  He will level with you and is no fan of rads.

http://www.breastcancerconsultdr.com/about_dr_lagios/about_dr_lagios.html

Just to note, that study was done quite a few years ago, and the amount and methods of delivery of radiation has changed quite a bit over the years.

According to my RO, the risks of developing a new cancer due to the radiation were more in the .05 range.    I had my rads done in the prone position too, which decreases the amount of radiation that the rest of the body (heart, lungs, contralateral breast) is exposed to.

Not saying whether or not you should do rads, but I would recommend talking to an RO or two to find out more about risks based on TODAY's treatments, not what they were doing in 1965 as the technology has changed quite a bit since then.

Raspberry, I'm a bit of a research geek so I just went through the study.

First the bad news:  The increase in leukemia is not a 6% increase, it's a 600%+ increase. And the increase in other cancers is 70%. 

Now the good news:  These are "relative risk" increases.  In fact, the actual risk that someone will get leukemia, even after radiation treatment, is only 0.3% - i.e. less than 1/3 of a percent.

Okay, let me use the numbers from the study to explain.  The study compared equivalent groups of women - some who had rads and some who didn't.  They compared the rate at which these two groups of women developed other cancers. 

Because leukemia tends to develop quickly after exposure to radiation, they included in their analysis all women who they followed for at least 2 years after their treatment.  This was 2,339 women in the rads group, and 2,377 women in the no rads group.  Note that this was all women of all age groups.  Of these two groups of women, 7 in the rads group developed leukemia and 1 in the non-rads group developed leukemia.  So this means that the "absolute risk" to develop leukemia for the rads women was 0.3% (7 out of 2,339; i.e. less than 1/3 of a percent) whereas the "absolute risk" for the non-rads women was 0.04% (1 out of 2,377; i.e. about 1/25th of a percent).  The difference between the 7 women and the 1 woman is a 600%+ increase - that's why there is such a big "relative risk" increase - but overall even within the rads group the absolute risk that someone might develop leukemia remains very small.

For the other cancers, because they tend to take longer to develop, the study analysed only those women who were followed for at least 5 years or more.  If any of these other cancers developed earlier than 5 years, it's a fair assumption to say that the cancer was already underway in the body prior to the exposure to breast cancer radiation, so the radiation was not be the cause.  The study had 1,267 women in the rads group who were followed for 5+ years; of these women 2.3% (29 women out of 1,267) developed some other type of cancer.  The non-rads group included 1,813 women who were followed for 5+ years; in this group, 1.6% (29 women out of 1,813) developed some other cancer.  

So overall, by having rads, the risk of developing leukemia increased from 0.04% to 0.3% - a 0.26% absolute increase (i.e. a 1/4 of a percent increase) and the risk of another cancer increased from 1.6% to 2.3% - a 0.7% absolute increase (i.e. less than 3/4 of a percent increase).  Technically these numbers can't be added together but if you did want to add them, it means that having rads results in just under a 1% absolute increase in risk to develop leukemia or another type of cancer.

All that isn't to say that I think that everyone who has DCIS - or even a small non-aggressive invasive cancer - needs to have rads.  It's a personal choice and I know that in some situations I would choose to pass on rads.  But I thought it was important to clarify the information from the study because the risk to develop another cancer is actually very small.

Hope this all makes sense!

raspberry, as I interpret it, the 26% to 7.3% improvement (i.e. a 72% relative risk reduction or a 19 point absolute risk reduction) only includes those who benefit from radiation, because the starting point is the 26%.  However it is certainly true that many women who have rads don't really benefit because they wouldn't have had a recurrence anyway.

Using the numbers you provided, let's start with a group of 100 women:

* 74 of the 100 women will not have a recurrence, whether they have rads or not. 

* 26 of the 100 women will have a recurrence if they do not have rads.

  * Of the 26 women, if all of them have rads, 19 will be able to avoid a recurrence. So 72% of the women who would otherwise have had a recurrence, don't have one because of the rads.

  * Of the 26 women, 7 will have a recurrence even if they do have rads.

What this means is that rads does not provide any benefit to 81 of the 100 women, i.e. the 74 who would not have a recurrence anyway, and the 7 who will have a recurrence even if they have rads.  But by having rads, 19 out of the 100 women will be able to stop a recurrence from happening.

Of course looking at those numbers, it begs the question as to why the 81 women would have rads.  The problem, of course, is that if you are standing in a room with the other 99 women, none of you have any idea which group you will end up in.  So you have to look at the size of each of the groups and decide where to take your chances.  When you consider that at most only 1 of the 100 women will develop another cancer because of having had rads (as per the previous research; I agree with Annette that rads is safer today so today the risk is probably no longer 1% but is closer to only 0.5%), but 19 women will be able to avoid a recurrence of their breast cancer, the benefit of rads certainly seems to outweigh the risks.  On the other hand, a 26% recurrence rate is an average, but every diagnosis is different.  If someone has a particularly favourable non-aggressive diagnosis and wide surgical margins, her recurrence risk might be as low as 4%.  In this case, having rads might reduce the recurrence risk to 1% (the same 72% reduction), which is a benefit but not nearly so great an absolue benefit as in the previous example, particularly when assessed against the risks and side effects from rads.

And that's why each case needs to be evaluated individually.