Radiation or mastectomy

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Nay84
Nay84 Member Posts: 7
edited August 2014 in Young With Breast Cancer

Hi everyone. I'm having such a hard time making this decision. A little history.. 

I was diagnosed with DCIS on April 11, 2014. I'm 29 years old with a family history of breast cancer. My cancer was 10 mm Stage 1 Grade 2.  ER/PR + HER2 - .No lymph nodes involved and I had a lumpectomy with clear margins. My onco type test came back a 10 and I don't need to have chemo. My Dr.s have recommended that I have a mastectomy though rather than radiation. They said that since I'm so young there is a chance of having cancer due to the radiation and a mastectomy will basically eliminate my chances of recurrence. Not totally but more than radiation will.

This is my dilemma. How do I decide? I really don't want the mastectomy. It seems so drastic when initially, my surgeon told me that a lumpectomy with radiation is the same as a mastectomy. I am so afraid of getting the mastectomy and just absolutely regretting it for the next 50 years. Also, I don't plan on having kids so I guess this is strictly vanity related. On the other hand, I really don't want cancer again. Or lung scarring. 

Did anyone else go through this? What helped you decide? 

For some reason this has been the worst part of this whole thing. I've been so positive up until this point. When I was first diagnosed I was absolutely ready for a mastectomy or whatever they were going to throw at me as long as I got to live. Well now I do get to live and I can't stop crying. I feel so guilty for not being grateful that my experience has been relatively easy. I'm sorry for whining! I know it could be so much worse.

Comments

  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2014

    I would get a second opinion for sure......unless there is something else going on, what they are saying isn't even true. Some studies have even suggested that your chances of recurrence are LESS with a lumpectomy plus rads instead of a mastectomy without rads.

  • Worriedmommyof2
    Worriedmommyof2 Member Posts: 3
    edited August 2014

    I was dianosed last July, one month shy of 32nd birthday, with stage 1a IDC, oncotype of 12. I had always thought that if something like this happened to me, I would have a mastectomy, but when it really did happen to me, I just couldn't do it. I went ahead and had a lumpectomy and radiation. If it was my left breast, I may have thought harder about the mastectomy, since it is closer to my heart. I had no problems with the radiation, other than some skin issues, and driving 45 minutes one one to get to the center. It's a big decision, that we shouldn't even have to be thinking about. 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2014

    Radiation is very precisely focused now & shouldn't be a problem even on the left side (I am a left side 'radiator'....didn't have any problems.)

  • TB90
    TB90 Member Posts: 992
    edited August 2014

    Nay84:  I agree with Ruthbru.  I would seek a second opinion.  I understand how difficult a decision this is.  I had to have a mx, due to size of my dcis, but radiation was optional.  I stressed myself sick over the decision.  But with all the research I did (and trust me I even amazed my RO) I discovered that radiation is so much more efficient now at hitting the precise spot and not damaging surrounding areas.  It is not without risks as is everything, but the risk is so small.  Of course with your young age, you will have more time to develop a secondary cancer, but that goes with aging period! This is such a difficult time for you, but know that you have choices and getting a second opinion may be just what you need.  ((((hug))))  And just as in my situation, a mx does not guarantee no radiation.

  • Nay84
    Nay84 Member Posts: 7
    edited August 2014

    Thank you all for taking the time to read and respond to this. It's so helpful to be able to get other peoples perspectives who have gone through this. I have an appointment with my GP on Wednesday and an appointment with a surgeon on Thursday so hopefully that will help my decision making. Thanks ladies :)

  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2014

    Don't let them rush you into something you aren't comfortable with. You could always have a mastectomy later, but once your breasts are gone....they are gone forever. They should have a specific reason if that is what they are recommending, not a 'it could come back'. DUH, as long as we are alive, it could come back." So push them. Go in with a notebook and write down everything they say. Be your own advocate!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2014

    This is from the BCO research pages, very current as it is from Feb. 2014. Print it out & bring it with you.

    Research Suggests Lumpectomy Plus Radiation Leads to Better Survival for Early-Stage Breast Cancer

    Published on February 20, 2014 at  7:52 AM


    Many studies done in the 1970s showed that lumpectomy plus radiation to treat women diagnosed with stage I or stage II breast cancer offered the  same survival rates as mastectomy. Based on these studies, the U.S. National Institutes of Health released a statement in 1990 saying that lumpectomy plus radiation was preferred over mastectomy to treat early-stage breast cancer.

    Right now about 60% of women diagnosed with early-stage breast cancer choose lumpectomy followed by radiation.

    Because the studies were done 40 years ago, researchers wondered if survival rates for lumpectomy plus radiation and mastectomy were still similar and decided to do a new study.

    The results suggest that women diagnosed with early-stage breast cancer who have lumpectomy followed by radiation have slightly better survival rates than women who have mastectomy alone or mastectomy followed by radiation.

    While the results seem perplexing, the design of the study may have had something to do with the outcome.

    The research was published online on Jan. 15, 2014 by JAMA Surgery. Read the abstract of “Effect of Breast Conservation Therapy vs Mastectomy on Disease-Specific Survival for Early-Stage Breast Cancer.”

    In the study, the researchers looked at the medical records of more than 132,000 women diagnosed with stage I or stage II breast cancer between 1998 and 2008 who were treated with either:

    • lumpectomy plus radiation (70% of the women)
    • mastectomy alone (27% of the women)
    • mastectomy plus radiation (3% of the women)

    The researchers compared disease-specific survival rates between the three groups of women. Disease-specific survival is how long the women lived before they died from breast cancer.

    Five years after diagnosis, disease-specific survival rates were:

    • 97% for women who got lumpectomy plus radiation
    • 94% for women who got mastectomy alone
    • 90% for women who got mastectomy plus radiation

    Ten years after diagnosis, disease-specific survival rates were:

    • 94% for women who got lumpectomy plus radiation
    • 90% for women who got mastectomy alone
    • 83% for women who got mastectomy plus radiation

    It’s not clear why women who had lumpectomy plus radiation had better survival rates than women who had mastectomy.


  • DiveCat
    DiveCat Member Posts: 968
    edited August 2014

    You say you have a family history, and you yourself are also very young....have you had genetic counselling and/or genetic testing?  For example, if you are BRCA+, you are at a much higher risk of a new primary in next few years than the "average" women who has had a breast cancer diagnosis, and so many BRCA+ women diagnosed with breast cancer choose mastectomy/bilateral mastectomy, to not only reduce risk of new primary but to also consider fact they would not be able to get radiation again, etc.

    Whether you have mastectomy or lumpectomy and rads really does not affect distant recurrence at all, either way. If the cancer cells have escaped, they have escaped, so the concern for you is reducing risk of local recurrence (like in chest wall, etc) or a new primary.  The risk of local recurrence depends a lot on margins, etc. Both lumpectomy + rads and mastectomy can be effective in this area, though a mastectomy generally allows for very large margins and removes a lot of breast tissue where local recurrences could otherwise occur (and also reduce breast tissue where new primaries could recur, but as you know it is not  a 100% guarantee). 

    Ultimately, you need to make the choice that is right for you, as you are the one that needs to live with that choice, but I certainly would ask for a referral for genetic counselling if you have a family history as that appointment, or any testing, will provide more information as you make your decision.

    Also, I am a bit unclear as to your diagnosis as you said you have DCIS, but then said you have Stage 1. DCIS would be Stage 0, unless you are saying they found an invasive component after surgery?

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