Had surgery, Don't want radiation...

A good question might be to ask Dr. Marisa Weiss herself. In a recent interview on NPR, Dr. Weiss said that she was herself diagnosed with breast cancer. She followed a course of Tamoxiphen. She avoided radiation, which I remember Breastcancer.org and Dr. Weiss endorsing. She was fortunate NOT to have invasive cancer.

But a good question for her: How and why could she avoid what is often prescribed for breast cancer patients? Did Dr. Weiss have a mastectomy, or a partial mastectomy? Are there cases where radiation can be avoided? What about avoiding environmental risk factors as a preventive strategy---i.e. eating organic, avoiding chemicals in personal care products, etc.? Is that any replacement for the radiation 'benefit'?

Sounds exactly like me, same diagnosis and i also opted out of radiation. Did however go on Tamoxifen although am not happy about that so may reconsider it .My series of surgeries were about enough.

gymnut: I'm not sure what the "P" in "p Tis" means, but my understanding is that the "Tis" means "tumor in situ" which is another term for stage zero. Maybe the P means pre-invasive, which is what stage zero is.

You're in about the same situation I was in a month ago. Found calcs on mammo, did biopsy which probably got it all but then I had a lumpectomy. You don't say what size they believe your DCIS to be (or to have been). Mine turned out to be 1 cm.

I was able to have the lumpectomy with Intraoperative Radiation Therapy (IORT). If this is an option for you, I suggest you go for it! In and out in the same day, no followup radiation.  

It may not be indicated for you due to your age, the tumor size, or some other factor. (I think the main reason it isn't offered to most women is that their doctor doesn't do it, actually.)

If you'd like to post your entire path report, others may respond with additional thoughts. 

Talked to my surgeon who talked to my oncologist and the surgeon is still insisting I have whole breast radiation.  So, now I have to talk to the regular oncologist and radiation oncologist again and see what they say.  I'm getting really frustrated with these doctors and tired of thinking about all of this.  I'm just not sure if I want to do the whole breast.  There is no 100% guarantee that cancer will never show up again by doing that.  So, if it does and I've done the whole breast then I have no choice but to have a masectomy and who knows what else (chemo?).  In fact, there doesn't seem to be any 100% guarantee on any of the treatments.  All they can do is hope it doesn't come back and if it does, try and keep it controlled so it doesn't spread.  So, now I'm thinking "why put yourself therough any more than you have to?"  I'm taking tamoxifen and have made some lifestyle changes.  Can that be enough?  I have people that say I should have radiation and others that are practically begging me not to.  So, what's right?  Maybe it will help or maybe it will just add a few dollars to these doctors pockets.....who's to say?

Fran,

Lumpectomy alone without radiation is now standard of treatment for some DCIS patients. I chose this option in 2007after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist. He is one of the inventors of the Van Nuys Prognostic Index and has a consulting service that anyone can use. 

Using the VNPI he calculated my risk of recurrence as only 4 percent, which made me very comfortable in omitting radiation and tamoxifen. This might not be the right choice for you, but I think it might be helpful if you knew your chances of recurrence with and without radiation.

Please feel free to send me a PM if you have any questions I can help you with or check out my website for more information:

https://sites.google.com/site/dciswithoutrads/home

Hugs and best wishes,

Sandie

History

• 15 years ago (1995) I underwent a lumpectomy only for a different primary bc site; said "no thank you" to radiation following surgery for Ductal Carcinoma In Situ (DCIS) breast cancer, Stage 0 (based on my specific diagnosis and pathology).  I made my choice & never gave my choice a second thought.

• 10 years later my oncologist told me the survivability difference between those with my specific DCIS diagnosis/pathology between those who chose radiation and those who did not (I did not) was 5%, meaning I fell into the 95% who had no recurrence.  Radiation was contraversial then, as it frequently is

  ~now for micrometastases discovered in sentinal node biopsy pathology.

  I wrote a list of 25 reasons for WHY I chose to say "no thanks" to radiation.  My long list of reasons is long lost; however, I remember some:

• In addition to intuitive KNOWING I HAD A CHOICE!

• 1.  Dental - dry mouth leading to dental challenges

• 2.  Dermatology - skin burns and correlative challenges (just think about wearing a bra!)

• 3.  Not enough statistical data 15 years ago to make a "healthy" decision.

• 4.  Although the radiologist who was selling me on radiation nearly fainted when I told him "no thanks"~

• 5.  The oncologist upon hearing my "no thanks" to radiation said "Just a minute!" as he left the consult room ~ returned with a copy of a recent CA Journal article supporting my choice to forego radiation based on my specific DCIS diagnosis and pathology.

• 6.  A supportive husband.

• 7.  Unknown side effects.

• 8.  The fact I learned hospital protocol was to get people into the radiology program and once they were signed up and had their first treatment...THEN they were told about possible side effects & possible untoward results (including radiation may cause a secondary cancer). 

• 7.  Friends & family who did not understand my choice, but believed in my right to make a choice, and loved me no matter what.

I took a survey at the request of my oncologist (visited annually for a breast x-ray) during which the question was asked, "How much time do spend thinking about breast cancer?"  My reply,
"None."

Other than a little propensity to breast cancer, I'm quite healthy!  Active and employed at age 72, married to a great guy, enjoying grandchildren ages 4 and 7. 

I passed with "no thanks" to radiation 15 years ago for my specific DCIS diagnosis/pathology.

I am gambling again saying "no thanks" to radiation now for ILC (another primary site, completely apart from the original site with DCIS) with a 1.1mm metastatic sentinal node biopsy pathology following another lumpectomy for an ILC >1cm tumor  (other breast!  breast cancer is an equal opportunity knocker!

Whatever choice you make, it's yours to make.  My arms are around you with a hug, Colorado Morning Glory

Miles2Go, thanks for your response and reasons, good things to think about. I have decided to have the lumpectomy but am leaning toward not having the radiation. I am waiting to talk to the BS again about why they think I need radiation this time. I really don't like  the idea of having my body put through radiation another time. Depending on the final path report after the lumpectomy, I will probably at least meet with the RO if that is the way they think I should go.

Miles2Go,not sure I fully understood your dx. You had ILC this time and it showed up as positive in the sentinal nodes? Your dr. was ok with not having radiation for that? Are you having some other treatment besides the lumpectomy? Did the dr. go over what your chances of recurrace would be with radiation vs no radiation? Am I aksing too many questions  ?

Sunone,

The question is: What will your risk of recurrence be if you don't have radiation, and what wil it be if you do have radiation?  A big part of that answer is dependent on the size of the margins after your lumpectomy surgery.  If your surgeon is able to get wide margins (ideally 1cm), then your risk of recurrence with only a 4mm grade 2 tumor might be quite low.  In that case, the benefit from radiation (which generally reduces recurrence risk by 50%) will also be low.  But if you have narrow margins after surgery, your risk of recurrence would be much higher and then the benefit from radiation would also be higher. 

This article on the VNPI index show how much recurrence risk can vary, based on the features of your DCIS and the margins:

Ductal carcinoma in-situ: treatment decision breakpoints

If you look at the chart, you can see that recurrence rates ranged from 2% to 52%.  Quite a range!  The size of your area of DCIS and, to some extent, the intermediate grade, lean you towards the lower end of the VNPI scale, and therefore, to a lower recurrence risk.  But it's margins that can make a really big difference.  So I would suggest that you talk to your surgeon about this, that you tell him/her that you are considering opting out of doing radiation, and specifically ask about what size margins he/she thinks are reasonable to expect after surgery.  

thanks Cycle-path, I will ask about the IORT. I have Kaiser and don't think it is offered through them, last time my radiation was done through an outside provider that they contract with, this time the provider is UCSD and I don't see that as an option through them either, but I wll check on it. Sounds like a wonderful option to have it over and done with at the same time of the surgery.

Beesie, thanks, you were very helpful last time I went through this too : ). I just checked out the VNPI link and mine would be a 6 if she gets at least a 1 cm margin. I figure I would wait until the final path report to make the radiation decision, but sounds like it would be a good idea to let the BS know I am leaning toward not having it prior to the surgery. Do you think this being a second, but totally unrelated, occurance makes a difference? What about the necrosis, that is not mentioned in the VNPI . Just wondering if those would have anything to do with the decision. I put in a call to the BS on Friday, but she was in surgery all day, I missed her call this morning and was told if she can't call again today it will be tomorrow.

mchas: I'm not an expert, but I believe there's no such thing as NO breast tissue left. There's always some left, however small. That's one of the reasons some MX patients also get radiation.

sunone: I believe you're correct that Kaiser and UCSD don't have IORT, but it's worth asking anyway. UCSD does do SAVI, though. http://www.itnonline.com/article/ucsd-first-offer-new-advanced-breast-cancer-treatment

Blondee, get a second opinion. You obviously don't have faith in this dr. Not good. Your LIFE is on the line. Take care and best wishes. 

I also was against radiation.  I recently had a single mastectomy to my affected breast partly to try to avoid radiation.  I am not sure I can avoid it even with the mastectomy - it was a large area, in two quadrants and "DCIS ... closely approaches superficial margin (<1mm) in multiple areas."  Also my report says "a focus where microinvasion cannot be excluded is present within 1mm of the superficial margin."  I am now OK with the thought of getting radiation (left breast aka right over my heart) as this report is way too close for me.  The DCIS was nuclear grade 3, ER/PR+,  showing architectural patterns of solid, cribiform, and comedo, and under necrosis it says:  "comedonecrosis is present."  I have an appt with a radiation oncologist next week and I am waiting to hear back from medical oncology.  I am expecting to take tamoxifen and also to get some sort of radiation tx as I was 42 at the time of my diagnosis (43 now) and pre-menopausal. So I echo the point made earlier that obviously having a mastectomy doesn't mean by any stretch of the imagination that you can avoid radiation or anything else for that matter based on the biopsy.  On a positive note, I did save myself a few surgeries if I had gotten the lumpectomy as the 1st hospital presented to me as my only "option."  If anyone else has had a similar diagnosis and report upon surgery, I would be very happy to hear what you were recommended to have as I am in a state of complete stress until I am able to speak with the rad/med oncologists.   

llrfort86, you are not alone.  Check out the thread below - DCIS, BMX/MX and radiation ladies:

http://community.breastcancer.org/forum/68/topic/774625?page=3#idx_68 

I haven't decided what I am doing about radiation yet either; I understand the stress of trying to decide!