No radiation?

Hi - I opted out of rads with the oncologists blessing.  Clear margins were obtained in my lumpectomy.

Good luck with your decision making. x

Sorry... I answered this from an IDC perspective before realizing that this was a DCIS question.

The actual risk for any of the side effects from radiation are dependent on a patients prescription -- this prescription is dose of radation, fields that are targeted (e.g., where the specific tumor bed is, whether or not there is a boost, and duration - a function of dose).  For this reason, it is difficult to generalize "risk".  During the simulation for radiation the fields and dose are calculated, and then your RO should sit down and discuss exactly what the risks are for your particular case.  The field for some women, even with left-sided malignancies, miss the heart completely (depends on their anatomy and the direction that the beam will be coming from).  The radiation equipment is very targeted these days, so, fortunately for us (but unfortunately if you try to do research on the topic) many of the "statistics" are outdated.

Yes, there are some side effects, for *most* women (especially if they are young and healthy) are well-tolerated and worth the reduction in risk of recurrence.  Your RO should go over your specific risk profile *in great detail*, including percent risk for all side effects, if they don't do this - then you should find another RO; seriously. 

Best of luck to you, these decisions are so hard.

I was ready to opt out of radiaiton, but decided that I would attend a consult appointment with a radiation oncologist first to make sure I had all of the info to make a decision.  He recommended that I get partial breast radiation, which targets the area right around the tumor bed where the recorrance rate is highest.    It was only for 5 days.  It was the right option for me, because I had the piece of mind that I was further reducing my risk of recurrance, while greatly reducing the risk of side effects. 

Bobbin, another woman that you should send a PM to is Sandie, who goes by the screenname SJW1.  She was one of the first around here to consult with Dr. Lagios and she's another who opted out of rads.

I believe that Dr. Lagios charges for the consultation so as long as you are willing to pay, I don't think that your being in Canada would be a problem for him.  I'm in Toronto; where are you?

Bobbin, I was treated at PMH but I had my excisional biopsy at a different hospital. When I transferred over to PMH, they had their pathologists look at the removed breast tissue. There have been recent reports that suggest that pathology results for DCIS can vary considerably from one pathologist to another, so it's always a good idea to get a second opinion.  I didn't know that back when I was diagnosed but I lucked into getting the second opinion when PMH asked to review the pathology slides from my surgical biopsy.  Turns out that they concurred with the first report.  So even though this is a delay for you, getting the second opinion is a really good thing.  And everything I've heard about Sunnybrook's breast cancer program is great. 

MNSusan, I'm sorry that you've been diagnosed again. You mention that it's a second primary cancer. Is it in a different location of the breast than the first diagnosis? I'm always curious as to how doctors determine if a second cancer in the same breast is a recurrence or a new primary. 

I was IDC not DCIS, but I did have left-sided radiation (whole breast and regional node), and want to address the issue of radiation and heart- and lung problems.

IF you opt to have external beam radiation, you will have a MuGGA test prior to treatment to determine how heart-healthy you are.  If there is any question of pre-existing heart damage, radiation may be off the table for you.  Then, you will have a CT scan of your chest to see where in your chest your heart is situated.  Is it close to the front of your ribcage?  Or is it further back, more "centred" within the ribcage?  This information is, then, fed into a computer programme, where a highly-specialised radiation technician will use this data to determine where the radiation beam will be focussed during your treatment.  Several "simulations" will be run and double-checked; by the radiation technician, by other technicians, and by your radiation oncologist.

If it turns out that your heart is situated closely enough to the front of your ribcage that it is in danger of being 'nicked' by the radiation beam, you wil receive instructions on using the 'deep breath technique' during your radiation sessions.  Most times, when you take a very deep breath, the air filling your lungs is enough to push your ribcage/breast out several inches, hence taking your heart completely out of harms' way.  Since the radiation beam is only 'on' for very short periods of time, you need only hold your breath for under a minute.

Prior to treatment, you will likely, also, receive a chest x-ray to ensure that your lungs are healthy.  Any lung issues - however minor - may, also, take radiation off the table, depending on their nature.  But, if your lungs are 'clear', the MuGGA is 'clear', and the simulation programmes are successful in minimising any potential, long-term risk/damage to your heart and lungs, then radiation treatment can proceed if it is what you wish to do.  Every effort will be made by your treatment team to assess your risk of complications prior to treatment and to minimise the risk of experiencing those complications throughout treatment.

Other than having a 'sun-burn' reaction - entirely normal and expected - to the radiation treatment, I did not have any other issues.  I followed all instructions for skincare to the radiated areas meticulously during treatment.  It has been over six months since completing radiation; my heart is fine, my lungs are fine and, just a few weeks ago, I completed a 59 kilometre bike hike in a single afternoon.  I feel great.

I was diagnosed with a tiny focus of DCIS in July 2008 and did NOT have radiation treatment.  My situation is NOT identical to yours, however I will share my 'story'.  I had my diagnosis of DCIS -- left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision.  Mine was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy.  I have not had any additional treatment besides my excisional biopsy in July '08 which got that tiny area of DCIS out.  At follow up appt. a week after that biopsy, a medical oncologist spoke with me and told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation.  He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again.   I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a pass.  Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.

I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS.  In summer of 2011 microcalc’s were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions.  Just this past July 2012 a small grouping of microcalc’s (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign.  So, while I don’t feel I am that far out from the initial DCIS diagnosis and have had to endure additional (thankfully benign) biopsies, so far so good even though I chose not to have radiation.   Not sure if that will help you in your decision making, but that’s my story at this point.

Bobbin,

I just posted most of this info in response to Slate 5 a few minutes ago, but since your question is similar I will repost.

In 2007 I had Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service anyone can use, review my pathology when my local pathologists said I didn't get good margins with my lumpectomy.

Dr. Lagios disagreed with the local pathologists and said I did get good margins and did not need a mastectomy. He also calculated my risk of recurrence without radiation,using the Van Nuys Prognostic Index, as only 4 percent. Because you can only use radiation once in the same area and because my risk was so low, I chose not to do radiation. The 50 percent radiation typically provides would have only been 2 percent in my case.

Another tool for assessing your risk of recurrence without radiation is the Oncotype DX genetic test. This is fairly new and somewhat untested, but could be a valuable piece of info in conjunction with the opinions of your doctors.

Also please don't stress that it is taking a long time for several pathology reviews. Since DCIS is non-invasive you can take your time to reach a decision that is right for you. I waited 6 months from diagnosis to surgery. (Another of Dr. Lagios' ideas).

If you would like more info re Dr. Lagios, the VNPI or would like to read more of my story, please go to my website: dciswithoutrads.com/.

Please also feel free to PM me anytime.

Wishing you all the best,

Sandie

Bobbin - I'm popping in a little late but I wanted to let you know I also opted out of radiation with the blessing of my oncologist and a surgical oncologist I consulted with.  I was diagnosed in 2003 and had a little under 5 mm of intermediate grade DCIS.  Making this decision was very, very difficult.  So many mixed feelings going on at that time.  Nine years later and I'm still around.

Dr. Lagois is the best, if you can talk with him please do.   I think if I had it to do over I would have had a phone consult with him.  Meanwhile, I'm glad to read your RO is getting a second pathology report.  I think everyone should do that.  Blessings to you in whichever path you chose.

Bessie-Thanks for sharing about the Van Nuys Prognostic Index.  I used this index to make the decision to have a mastectomy in lieu of a lumpectomy and radiation.  I was truly on the fence until I saw this index.  I score 11 out of 12 on it.  I am glad I made the decision that I did.