Lumpectomy WITH NO RADIATION- Need to hear from others!

Just a quick update: the two oncologists I spoke with agreed that I should explore my reconstruction options first.

They both said that although, as doctors, they like to get all treatment underway as quickly as possible, that they didn't see a problem delaying rads for my particular case of DCIS until I have all the information I need. (Indeed, although they recommended rads, they also made it clear that it was my choice and if I chose not to go that route, then I would be very closely monitored.)

They also agreed to ask for an amendment to my pathology report to include the actual surgical margins.

Thanks Beesie.

Trust me, I was wishing I had a Pocket Beesie to bring with me and sit on the consultation table. Maybe you could market something like that? 

I do feel lucky to have had these two oncologists: getting a good doctor or surgeon in the Canadian health care system really is hit or miss, and it's almost impossible to get rid of one you don't like. I also feel that, whenever possible, if you go into an appointment with as much information as possible, it does help them to know you've done your homework. 

Hi mrkffr11 -

That sounds promising and it's really important to like your doctors, in my opinion. Sounds like you are getting lots of information early as well, which is great.

Good luck with the lumpectomy tomorrow!

scrappylady, 

What was the size of your DCIS, the grade of your DCIS and the size of the margins?  If you had a very small low grade DCIS and if your surgical margins are good, then your risk of recurrence might already be very low, even without taking Tamoxifen.  In fact, since radiation wasn't recommended for you, my guess is that your recurrence risk is probably in the single digits, possibly only 5% or 6%. What you have to remember is that the average woman walking around out there has a breast cancer risk that is greater than that - and yet the average women doesn't worry all the time about breast cancer.  Before you were diagnosed, your risk was greater than that; did you worry all the time?

The bigger benefit for you from Tamoxifen might be the reduction in risk of a new BC.  Once any of us have been diagnosed one time, our risk to be diagnosed again - not a recurrence but a new primary - is higher than average.  Tamoxifen can cut this risk by about 45%.  But.... and this is a really huge BUT..... our risk to be diagnosed again is spread out over the rest of our lives.  What I've generally heard is that the risk is about 0.5% per year (unless you have other significant risk factors).  Taking Tamox. for 5 years will reduce your BC risk for at least 10 years, and maybe as long as 15 years, but if you are in your 40s or 50s and expect to have another 40 or 50 years ahead of you, taking Tamox for 5 years now won't protect you in the years when you are older and you face the greatest risk (annual risk increases as we age).  In my case, I had a single MX at 49.  My risk to be diagnosed against, in my remaining breast, was estimated by my oncologist to be about 22% - spread out over 51 years (till I was 90).  Doing the math, I figured that taking Tamox for the next 5 years would have reduced my risk by at most 4% - taking it from 22% to 18%.  So I decided to not take Tamox - and that in fact was exactly what my oncologist recommended.  He said that I might want to consider taking Tamox when I'm older, if I'm concerned and wanted to lower my risk at that time.

I'm not suggesting that you stop Tamox, however certainly you should consider Tamox to be optional - a choice that you get to make - and not something that is necessary.  Only you can know if the right decision for you is to stick with it or stop it.  But I wanted to provide a bit of information that might help you with your questions for your doctor, and help you put your risk - and the benefit from Tamox - in perspective.

I had partial breast radiation four years ago outside of a protocol and it was covered by my insurance. The only good thing about DCIS is that you can take the time you need for a second opinion about radiation. Go to someplace near you where they do partial breast radiation and get evaluated by one of those particular radiation oncologists who do it.I did it and have no regrets.My radiation was done at "the second opinion" facility by the second opinion physician.

My first radiation onc eval was at one world-class university medical center who offered me full breast radiation because they didn't offer it. That was unacceptable to me as I only had 4 mm of DCIS and wanted to preserve my breast. I also had five of six different doctors I respected telling me radiation was a good idea for me. 

I didn't want to have any regrets down the line that I didn't do everything possible to make sure this cancer doesn't come back. It's been four years for me and I'm doing well. No cancer!

Good luck!

Mary

mrkffr, so glad to hear your good news. I understand about the "survivor's guilt" - I kind of feel like that too. Will be having radiation to treat my tiny 2mm DCIS, but feeling bad for those who started out like me (calcifications on mammogram) and are dealing with a much worse outcome. It's a matter of degree and you could say luck. So don't feel guilty, just feel grateful and take care of yourself going forward.

Hope your friend on the other thread will be okay.

xoxoxo

My initial diagnosis was DCIS, Low Grade, ER/PR + and the surgeon told me I would probably NOT need radiation therapy. Since my sister died of breast cancer at age 40, I went to the best breast cancer treatment center in my area (UCSF).

They reviewed my original pathology and upped my grade to intermediate. I had a lumpectomy on 3/21 and had way clear margins. All over 1 cm. The UCSF tumor board (after reviewing my case) recommended radiation and tamoxifin. Like you, I didn't want to over treat my condition.

I had an appointment with a Radiation Oncologist at UC Davis cancer center yesterday. Thinking I was going to get an opinion on whether radiation was needed or not. In a nutshell this is what was explained to me...

Standard of Care (where radiation therapy is concerned) if you have DCIS that measures 1 cm or less and are LOW grade, radiation therapy is NOT recommended. The current clinical trials that are out there for partial breast irradiation are ONLY allowed in a clinical trial setting. Like you mentioned earlier, in a clinical trial setting you have a 50% chance of having the expermential partial breast irradiation or the "standard of care" treatment.

The radiation oncologist determines your status based on the FINAL pathology from your lumpectomy. In my case my final pathology was intermediate grade and my area of DCIS was 1.5 cm. Based on my pathology, my standard of care is 5 weeks of whole breast irradiation (to prevent reoccurance in any area of my left breast) and 1 1/2 weeks of partial breast irradiation to my lumpectomy site.

Both radiologists I spoke with explained their recommendation because of my age (apparantly at 51 I'm considered young) and the clinical study outcomes that indicate women in my situation have about a 5% or less chance of any breast cancer reoccurance in the treated breast versus a 32% chance without treatment. Based on this information (which basically confirms all the research I had done on my own) I've decided to go with the "standard of care" radiation treatment. 95% chance of no reoccurance versus 68% of no reoccurance makes me very comfortable with this decision.

I'm going to be meeting with a medical oncologist in the next few months to hear about the risks and benefits of tamoxifin. My gut reaction is I don't want to do this. The benefit to me would be to knock of 2-3% more in my favor. 97-98% chance of no reoccurance versus 95% of no reoccurance. I'm comfortable taking that risk.

I hope this helps while you try to decide which treatment option is best for you.

Great information Auntie.  Thanks for sharing it!

Thx Auntie for posting your info.  Im waiting to meet with RO - and scared about rads.  Mine is also v v small - but also dont want to take chances of recurrence.

Thank you!!  So basically you have to wAIT till after surgery to know for sure??

I also had calcifications.....that were few, and removed at biopsy - the tissue around it showed NO cancer.  I have one small lesion i the same area that is contained and 12mm...... So i might might might fall in to that catorgory as well.  Just wondering if you have to wait for pathology for them to make that decision......or prior to that.  Im assuming after......bc of course, more waiting........

I'm 10 years younger than you with DCIS (stage 0), intermediate grade. I opted for the MammoSite radiation (the clinical trial being conducted at my hospital was filled for my age group) and had the spacer and catheter inserted during the lumpectomy. Like you, the site ended up too close to the surface and I couldn't go ahead with PBI. Boy, did I cry!! I did not want to go through the whole breast radiation, but the statistics for my case were similar to what Auntieoftwo described. So I bit the bullet and moved forward. I did not have an easy time with radiation and I still wonder if I could have skipped it, but I'll never know. I just hope to be cancer-free forever!