Topic: Rads not recommended after lumpectomy?

Hi there,

I was just diagnosed last week, so I still do not have all of the information about my situation (genetic testing tomorrow, MRI Thurs).  I was told I had a 4mm papilloma (benign growth) that had DCIS contained in it, so I'm thinking the area of DCIS must be very small.  I had a lumpectomy with clean margins, although I do not know how big the margins were.  It was grade 2, ER, PR still pending.  So far I have not seen an oncologist or a radiation oncologist, but my breast surgeon told me I would hopfully not need any further surgery (pending MRI results I guess) and would need 6 weeks radiation.  My sister was dx with LCIS last year and was not able to tolerate Tamoxifen.  She had bilateral mastectomies 9months ago and when the pathology report came back on her breast tissue, it showed LCIS, beginings of DCIS, lobular and ductal hyperplasia.  If she had not had the mastectomies, all of that would have remained a ticking time bomb!  I'm really anxious about the thought of radiation, but more scared of being diagnosed with a much worse reoccuence.  Sorry I have rambled on here! 

Hi. Really glad to hear from you . It has been awhile since I've read any of your posts. I started this post because I fely that I had to be one of a small handful of women who did not have rads. I still am nervous about my choice, but rads were not recommended to me by a surgeon, onc and rad onc. I know what you mean about those "stories". But I tell myself they are rare, and very unlikely. Then I move on with my day. Five years is great, good for you. I'm sure your MRI will be fine. You rotate with mammos, right? That's what I do. My mother in law had what I think was DCIS 25 years ago. She had a lumpectomy and never really thought to much about it again. She never even thought she had breast cancer. My doc calls DCIS a pre-cancer because it could become invasive if not treated. I tell myself it's time to get off the boards and move on because there aren't too many of us here, but I still get valuable info from Beesie and others. PM me any time. Again, congrats on 5 years. It's likely this is all behind you. Nada

Louishenry, yes, I rotate MRI with mammo, one every six months.  Right now I am waiting for the MRI approval to come through from the  insurance company.

Who do you see or what do you do as far as doctor follow up visits?  I see my oncologist every six months.  But honestly, I think I am the only one in my position who sees her that often.  It's usually a quick visit and she probably wouldn't even see me but she knows how much I worry about everything!!!!!!  I guess oncologists are only for those who are having chemo, aren't they?  She is the one who orders my mammos and MRI's.  My gyno, well I don't have too much faith in him in this dept, he told me that he would rather leave the breast issues to the expert, not in those exact words but that was the gist of what he said.  My surgeon moved out of the area a couple years ago so I don't see him.  And my PCP, well breasts really aren't his field. 

It's hard to move on after a diagnosis of cancer, even if it is "extra-lite cancer."  It's always there in the back of my mind. 

I know there are others who have had no rads - if you are reading this please pop in and just say hello!

Hi eibbed, Have you started the tamoxifin yet or are you still looking at the bottle?  I am not taking it.  I saw so many doctors in my first 9 months after diagnosis and their opinions on it ranged from, "You definitely need to be taking it," to "I think the risks outweigh the benefits."  In the end I decided not to.  I do have a prescription for Evista (raloxifene) which my doctor gave me but I haven't filled that yet.  It is a drug for osteoporosis and has been shown to be effective in prevention of bc.  I do have some osteopenia so that is what I would be taking it for and hopefully it would give me the added benifit of a little bc prevention.  But it's not going to do me any good if I don't fill it!

MRI's and mammograms - generally speaking mammos are better at  picking up calcifications than MRI's but MRI's are better at picking up tiny things and other things that can easily be hidden in dense breasts.  It is a good idea to rotate the two.  The combination is more effective than just having one test.  My doctor didn't want me to have an MRI until a year after my lumpectomy. and for the first year and a half I had both.  MRI's tend to show lots of false positives which was why I kept going back every six month.  so far, so good.

Hi all. Old oak tree, I do see an onc every 6 months, probably because I'm on tamoxifen. My bs orders my mammos, us/ mri for me. My mri's have been fine so far, no false positives or anything odd looking. Eibbed, I have few side effects. Mainly some night sweats. That's it so far. The one thing that I learned through the whole tamox journey is don't assume that you will have any problems. Many women don't. I am happy that I decided to try it. It's been ok for me. Also, about those "stories". I still feel that many women (even here) don't understand dcis. They will say that they got mets from dcis. That can't happen. I do feel horrible for them and none of us can say that we won't get another primary that could lead to mets, although unlikely. It's been about a year for me and I still think about my dx, but less. I had such a small amount that I can't let it run my life. I keep all my appointments and do  bse. I have cut back on alcohol. Just drink some wine on the weekends. Praying a little doesn't hurt either. Tamoxifen makes me feel more confident, even though the benefits weren't huge. Let's all of us no rads girls try to keep in touch. Best, Nada

Hi

I thougth the standard of care with all DCIS was  lumpectomy, rads and tamoxefin. I had lumpectomy, rads and took tamoxifen for 4 months , til I developed abnormal bleeding and then had a lesion taken off my uterus.  My doctors believe the lesion was there before the meds, but it just fuel it. I have decided not to take the tamoxifen any more and my oncoligist it fine with that. I too am fine with it. I see my oncoligist every 6 months.

I also decided not to have radiation after my lumpectomy in August 2007. My surgeon told me I was at most risk of being overtreated. The first radiation oncologist I saw DID recommend radiation, but I got a second opinion and the second rad. onc. was able to think outside the "standard of care" and make a recommendation based on my particular DCIS. It's a hard decision to make, and I'm glad to see some of you have made the same one. I couldn't find anyone that didn't have radiation when I was trying to decide what to do. (I didn't know about this community back then). I am taking tamoxifen, and was scared when I began it, but it hasn't been too bad. I had already gone through menopause, with hot flashes, but the hot flashes caused by the tamoxifen aren't as intense or as frequent as what I experienced naturally.

Hi Jewel,
I am glad that you made decisions that were right for you. Did they give you chemo because of the possibility that your breast cancer was more than DCIS? Ductal carcinoma i situ is defined as cancer confined to the ducts - without having spread outside the ducts you would think chemo would be contraindicated? I know that I was first diagnosed with only DCIS, but after additional surgery it turned out there was an IBC component hiding deep beneath the DCIS. I often wonder how sure we can all be about our diagnosis when only a small area of the breast is actually removed - so chemo may in fact be needed even though the biopsy says DCIS-
Patience

Jewel, you must have had more than DCIS. You state you have "stage 1" and DCIS is stage 0. Plus you've had Her 2 testing that isn't usually done for DCIS.  You may have had a stage 1 where there's a choice to do chemo because some stage 1 's can avoid it. Congrats on 4 years.

I recently bought the book "Breast Cancer What You Should Know (But May Not Be Told) About Prevention, Diagnosis, and Treatment" by Steve Austin and Cathy Hitchcock.  Cathy was diagnosed with stage 1 bc in 1989 and after she and her husband (Steve Austin and a naturopathic physician) did much research she decided to have NO additional treatment - no rads/tamoxifin/chemo.  What she did do was make major dietary changes.  The book was written in 1994 and I was very interested to find how she is today, almost 20 years later.  Through the wonders of the internet I was able to find her and sent an e-mail to her.  She was kind enough to reply and told me that she is disease free and has had no recurrences.  I found that to be very encouraging.

The book has a lot of intersting info about treatment plans for bc - pros and cons though it tends to be biased towards lesser treatment.  A lot has changed since the book was written and because of this Cathy was very clear in saying that women shouldn't use the info in there to make treatment decisions today; unfortunately they don't plan on writing an updated version.

Even though it may be outdated, I think it still makes for interesting reading.

Hi I also had DCIS (lumpectomy) with no radiation and no tamoxifen.  It's been five years since my diagnosis and I'm doing fine.

Catherine

Hi Catherine. I have often wanted to talk to you. You seem to have had the same type of pathology as I did, since you did not need rads. I had a very small amount that was not comedic. The biopsy ended up taking it all out, so obviously the lumpectomy margins were huge. The Docs said that my chance of recurrence was low and I really would not benefit much from rads. Is that what they told you? Did they mention what the percentage would be of a new primary? I was told about 7% over 10 years, then less. That doesn't seem like very much, and yet so many women get a new BC. I just had another biopsy done for new calcs on the opposite side of the DCIS (do you believe it?!), but they were benign. I started this post because there are not to many of us on these boards that rads were not recommended. I just would like to keep in touch from time to time. Thanks, Nada

Geez... I can't imagine that diet lasting longer than an hour!!Anyway, I am not a stats guy Old Oak Tree, however, I am totally confident that your MRI is perfectly fine. It's been five years of normal tests and the numbers are really on your side. I would love to be in your shoes, and Catherine's right now! I certainly don't want to rush my life, but 5 years is big! I would be very surprised if your MRI came back anything but normal. Let us know ASAP. I would call them, by the way! Nada

Thanks for starting this thread.  I have made the decision to not do rads.  I have stage 0 in both breasts.  I had lumpectomies in both breasts with the right only showing what was found in the needle biopsy and the left showing 4mm.  I have large clear margins.  Tamoxifen was not recommended.  Both radiologists I saw recommended standard treatment for full breast radiation.  Both stated an argument could be made to forgo radiation.  My sister has stage 3 breast cancer.  I considered bilateral Mastectomy but both surgeons felt this was not the best coarse.  This decision was very hard to make.  In the end it came down to a gut feeling, and my head just telling me I have a non life threatening disease that I could cause myself some other serious problems if I let my fear of the future make my chose.  I was told I had a thirty percent chance of cancer coming back.  With radiation I could lower it to 15 percent.  That's 50 percent improvement but the risk of rads was not worth the 15 percent to me.  I have seen the problems my family had with rads and I know the emotional damage would not be good for me.  It would put the stress on me that I think cancer thrives on.

I could be wrong but it is my decision, my life.  We all have to make our own decisions.