Recurrence after radiation?

kittenpaws37 · May 2013

Just how common is this in reality? Is it more common to happen years later or does it vary? I know rads are supposed to cut risk by 50% and every women's risk is different but I am still curious about undergoing radiation treatment and then finding a recurrence or new breast cancer in the same breast. Have you all encountered many women that this has happened to?

Since you cant get radiation on the same breast twice, although apparently in some situations you can but i dont know what those situations are, you are left with mastectomy as only option. Did this make anyone with a dx like DCIS Stage 0 forgo radiation? What are the options if it does come back and youve had radiation? I assume that only if invasive would a mastectomy be done or if multfocal DCIS ? Otherwise , would only a lumpectomy be ok?

Im trying to come to peace with the best way to avoid a mastectomy as preventative method. I want to try and conserve my breasts for as long as possible at this point being still young and to be frank, not sexually active and the thought of losing breasts withouth having had much in that realm as of yet, saddens me a great deal. So I feel my situaion is actually unique and hard to explain bc I dont want to share such personal info with everyone. I dont want to make a stupid decision though an forgo rads if i really shouldnt. Its just boggles my mind that if i choose a treatment now, it can affect my future since there is no way of knowing at what point a recurrence or new bc. can pop up...years later or sooner. Or never...which is preferable!

Thanks for any input.

netty46 · May 2013

There is a forum here called recurrence. You will meet women there who can answer this.

proudtospin · May 2013

well my thought process was this, I have less chance for a reoccurance with rads than if I forgo them.

In the past 5 years (and I have DCIS grade 3 with some comedio type), I have had 2 biopsies for funkie new stuff on my mamo.

at the last one, my surgeon said that if after all we through at my DCIS, if it came back then a mastectomy was my only option

I live in central NJ also known as big time pharmaceutical land with tons of choices for some really great cancer centers

my surgeon is considered one of the best in NJ

so I am confortable with my choice. Mastectomy, is so far avoided and I hope it is forever

kimbo6891 · May 2013

Hi, Kittenpaws37,

I had a lumpectomy with radiation in 2008 with a recurrence in the same breast this year. This time I opted for BMX with tissue expander reconstruction. Unfortunately, the effects of the previous radiation made it more difficult for my mastectomy to heal so within just a couple of weeks of my surgery, I had to have the TE's removed and be without anything for a minimum of 6 months to allow healing. I know there is always a risk of non-healing with any surgery, but radiation just increases that risk. If I could have looked into a crystal ball and seen myself 5 years down the road, I would have chosen mastectomy in 2008. I'm not sure if I have been any help or if I have made your more confused, but I would recommend asking your treatment team (oncologist, radiation oncologist, breast surgeon, and a plastic surgeon) what they recommend. Best of luck to you!

SJW1 · May 2013

Hi Kittenpaws37,

It seems to me what you really need to know is what your recurrence risk is with and without radiation. One way to do this is to use the Van Nuys Prognostic Index. The VNPI calculates risk by assigning a point value to each of 4 categories: Your age, the size of your DCIS, the grade and the size of your surgical margins.

I was diagnosed with DCIS in 2007 and had a lumpectomy. I then consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service that anyone can use. He reviewed my pathology and imaging and calculated my risk as only 4 percent without radiation. Because you can only use radiation once and I would only get a 2 percent risk reduction benefit from radiation (50 percent reduction), I opted to omit radiation.

I have not had a recurrence in the last 6 years, but if I did, my options would be exactly the same as they were initially. Lumpectomy only, mastectomy, or lumpectomy with radiation, depending on what they found.

Please feel free to send me a private message if you have any questions. You can also check out my website if you would like to read anymore of my story or get more info re Dr. Lagios or the VNPI: http://dciswithoutrads.com/

Because DCIS is non-invasive you can take your time deciding what would be best for you. Only you can know what will give you peace of mind.

Wishing you all the best,

Sandie

kittenpaws37 · May 2013

SJW1.. I did look at the VNPI and I seem to have a score of 7 if i include my age. Without age, Im a 4. I mentioend the VNPI to doctors (even my second opinion dr who ended up being the chief of rad at a major cancer hospital) all discredited the VNPI and Dr. Legios bc the tool hasnt been validated according to them. The sited studies that showed women who passed on rads for DCIS and many of them were returning with recurrences. So, that wasnt very assuring for me. Although a 7 on the index does recommend radiaiton from what i recall. Not sure of percentage.

I am currently at the two month mark after my lumpectomy. I had my second opinion at 6 weeks and was being told the time frame usually went up to 2 months. So, I had my RO appt yestrday and actually went ahead with mocking and graphing and even got the three little tattoo marks. I am proceeding as if Im doing rads but I was going to use this weekend to mull things over. Its incredibly difficult bc there are no guarantees. None of my drs mentioend the Oncotype test . they have put my recurrence risk at 20% unless its higher due to one case of breast cancer onmy fathers side. All the doctors i have seen are not keen on passing on radiation for DCIS even stage 0, 7mm tumor, with a lumpectomy that came back benign. They dont seem to think that having no other option other mastectomy if it returns is no big deal. I understand now that passing on rads now doesnt mean a mastectomy is out bc DCIS could return larger or in more spots making lumpectomy not viable. But what are the chances of that really happening. Ugh. Its frustrating me bc when i was first diagnosed, I was told the breast cant be radiated twice as if that was just how it was and well, nothing could be done. I never thought to question not having radiation at that early point. But once you start realizing all the info and effects of everything, things are no longer so simple.

Recurrence after radiation?

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