DCIS- Recurrences/ (Radiation vs Mastectomy)?

danalaw1

Hello,

I am a 36 years old female that was diagnosed first with Atypical Ductal Hyperplasia back in August of 2015. I opt to get a lumpectomy to remove that suspicious area in my left breast November of 2015. When I had my surgery, the pathology report came back and I had like 3mm of actual grade 2 DCIS with neurosis. So, I had to go back two weeks later to get another lumpectomy to make sure that there was nothing else there. The second pathology report did come back as clean margins and tested negative for any cancer. So, I currently am trying to decide if I should pursue radiation or bilateral mastectomy (being that during my MRI back in the summer they did find a nodule in my right breast which was diagnosed as fibroadenoma) and that was unexpected at the time and was told they will just monitor that and not remove that from my right breast. Based on my oncotype test, I scored a 22 (13%-20%) chance of a recurrence in addition I have to consider my age and being diagnosed with DCIS before the age of 40. I am currently waiting on my BRAC results and will get those results today.

However, after talking with the radiologist a few weeks ago and doing my own research about radiation, I am very concern about the long-term effects of this and how my body with react to this form of treatment (high dosage 6,000); as I my husband and I plan to start a family this year (which is why Tamoxifen is out of the question for me at this point) and I feel like this may not be a good option for me. Not to mention the score results I researched in reference to the oncotype score states it would not be worth doing/if the side effects outweigh the benefits:

ONCOTYPE DX TEST WE JUST WENT OVER (Found on cancer website/in reference to scores):

Recurrence Score lower than 39:The DCIS has a low risk of recurrence. The benefit of radiation therapy is likely to be small and will not outweigh the risks of side effects.

Recurrence Score between 39 and 54:The DCIS has an intermediate risk of recurrence. It's unclear whether the benefits of radiation therapy outweigh the risks of side effects.

Recurrence Score greater than 54:The DCIS has a high risk of recurrence, and the benefits of radiation therapy are likely to be greater than the risks of side effects.

As mentioned, I was a score of 22, so this is another reason why I am leaning towards not getting the radiation. My other option is a bilateral mastectomy. Which for me in my case with take my recurrence percentage down to 1%. I know it is a major decision to make and I only have like two weeks to decide on radiation or not because I supposed to start that 6 weeks from my last lumpectomy. I would love to hear from anyone who decided either radiation or mastectomy and that was diagnosed with DCIS and any pros or cons they experienced. I would also love to hear from women who after their decision if they experienced a recurrence or not 5-10 years later or sooner?

Thank you,

DL

Moderators

Dear danalaw1, We are very glad that you reached out to our community. While you are waiting for some responses from our members you can also check out the information on DCIS and treatment on our own website. Stay connected here and keep us posted. We are sending you a warm welcome. The Mods

blh625

I was diagnosed with DCIS in 2010 when I was 37. My mom died in 2006 of a recurrence after having BC in 1984. My mom did not have any treatments in 1984, only a double mastecomy. I was afraid of recurrence so I opted to have 37 radiation treatments after my lumpectomy. I wish I would have researched the radiation effects better because I don't remember my doctors telling me about the issues I am now experiencing.

Just recently, I was diagnosed with hypothyroidism, my metabolism is nil. I am taking thyroid meds. It has taken me 5 years to get my doctors to realize I'm not just complaining about how tired I feel. I blame my thyroid problems on the radiation. I am very low on Vitamin D, Iron, and B12. This could be a result of the BC but I think it may be a complication from the radiation. For me, the radiation was a necessary evil. Knowing what I know now, I would have opted for the DIEP surgery without radiation.

I have been thinking about having a mastecomy, probably the DIEP surgery that uses belly fat as breast tissue replacement. I cannot use an implant for reconstruction on the radiated breast due to potential complications. I wasn't aware of the implant issues before getting radiation.

My advice to you is weigh all your options wisely. Don't jump into radiation just because you are told too. You probably feel vulnerable, but stand up for yourself if something doesn't feel right to you. You will be the one living with your choices, not the doctors. I'm not suggesting that you avoid radiation, I just want you to know it has its downfalls.

I wish you all the best. You will be in my prayers!

Bethany

Moderators

Hi Bethany. Welcome to the BC.org forums, and thank you for sharing your experiences with all of us here!

Please let us know if can be of any assistance navigating the forums or the main site.

Best wishes.

The Mods

danalaw1

Hello Bethany,

I appreciate your response/sharing your story. I feel so blessed in reference to hearing from other women who are dealing with these same decisions and survivors.

Luckily, my breast ssurgeon wanted me to outweigh the options of radiation and mastectomy. He had set up a time for me to sit and consult with the radiologist to answer all my questions and concerns. In addition, my breast surgeon offered any knowledge on all subjects. I was scheduled to see my breast surgeon on this past Thursday, and I had to go with my gut and not choose radiation. 

I made this decision based off oncotype dx test results being low percentage in recurrence rate (score of 22/which was 13%), my BRAC test coming back negative, the second lumpectomy being clean margins and free of cancer, and the fact that lymphedema was a big concern which for me can put a hault to my fitness career and lifestyle. By being so young my genetic counselor, told me that is a major concern I should have. In addition, to  secondary cancer potential in another area of the body by getting radiation. So, I factored in all this as well as other questions answered by the radiologist and concluded along with my breast surgeon it was no need to move forward with radiation. We also opt to not do a mastectomy and we have a treatment plan of 1 mammogram a yr and 1 MRI a yr. So, I will be monitored on a regular basis.

However, my surgeon and I are in agreement (hopefully it will not return) that a mastectomy will be the direction I would go.

I just wanted to update my story and honestly I feel the same...go with your gut! You all are in my prayers! 

God Bless! DL

blh625

DL,
I'm happy to hear you have a plan and are moving forward. I also have a yearly MRI and mammogram for followups. I pray you never have to face this horrible scenario again.

I hope all goes well!!! Keep us posted!

Bethany

Essential

Dear BLB625

First let me express my admiration to you. I was diagnosed with RB IDC on Dec 02/15. I just got my surgery on Janury 5th . I decided a doble mastectomy. ER+/PR+ HER-2 Negative. All the test showed before my surgery where very optimistic. I was like you afraid of quimo or radiation. Unfortunatly during the process I learned that even the MRI, Chest X- ray and all the test and blink blinks out, nothing is concret. Always is a big chance that something else is going on. I has been a very good human taking care of my health and going for my anual checkups.

During my surgery they removed two sentinel Lymph nodes plus 27 adictionals. The evaluations of all 29 showed One only ONE lymph nodes with a metastic depost of 2.63 mm none one has a insolated tumor cells , and none one has a micrometast ases. if my metastic deposit was 2.5 I will never had the conversation with my doctors but a small milimmetric number can made a big diference.

What all it mean now, That ONE Nodes put me back in to my nightmare I need quimo and Radiation .

All I want to said is no one can warranty what can hapen to US, but any desicion you take need to be one that you can live with the rest of your life. I know my GOD is good and he will take care of all his creations.

God Bless you!