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NervousNellieTX
NervousNellieTX Member Posts: 13
edited June 2014 in Stage I Breast Cancer

Hi ladies!  I am so happy to have found this board several weeks ago.  It has been such a wealth of information, maybe too much!! lol

A little background, my mother was diagnosedin August with DCIS with microinvasion, grade 3.  ER/PR-,

So, after her first lumpectomy, her margins were less than 0.2mm, and she was going to have a sentinal lymph node biopsy.  So, she had another lumpectomy and the lymph node biopsy on Tuesday.  Her lymph nodes were negative, or clear, or no cancer.  We are assuming that her margins will be acceptable this time. 

She is 66 years old, and didn't originally want treatment.  We discussed it, and she agreed to follow her doctors suggestions.  At this time she has also been seeing a radiation oncologist, who suggests she start radiation in a few weeks, going 5 days a week for 6 weeks.  She really doesn't want to do the radiation.  At first, I urged her to follow through with the treatment, but I am beginning to reconsider.  I have used various online tools and it seems that the radiation doesn't impact her outcome significantly.  In fact, I think that if she ever did have another cancer, radiation wouldn't be an option if we did that treatment now. 

Of course, we will discuss this in depth with her team of doctors, however I am wondering if the idea of "skipping" radiation in absurd.  I understand it is the standard of care, but is it really neccessary?

Thanks for the insight!

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  • flash
    flash Member Posts: 1,685
    edited October 2010

    Hugs to your mom.  I'm sorry she had to join the club no one wants to join. 

    For everyone, the question of what treatment to pursue is a really personal decision.  There's a couple of things she needs to consider to make a good decision.  First but foremost, her decision needs to be hers, not mine, not yours, not the docs, but hers.  To get to that point she does need to make sure that she's thinking clearly and not rushing into anything. She needs to consider the impact of possible treatments and also the impact of not treating. Hypothetically,  IF she doesn't treat it and it came back, would it bother her more than if she did treat it and it came back.

    She needs to get an accurate picture of her type of tumor.  You mention the grade and the er-,pr- status but there's other information that comes into play for the doctors recommendations.  What is the her2 neu status? What size tumor for the DCIS?  Is the microinvasion multifocal or multicentric? What's the family history? Does she have lifestyle habits that will affect the recurrence rate? What is the % change in recurrence for her particular tumor  with or without treatment?  Most doctors will have considered all of this other information before making recommendations of yeah or nay.

    In terms of statistics, yes they are only statistics for a group; they are not specific to an individual. They also are usually outdated or only good for the specific group of data from which they were created. That being said, we do know that for SINGLE tumors, a mastectomy is equivalent in survival versus a lumpectomy with radiation.  If there is more than one tumor, that equivalency starts to skew.  the online tools you've used are probably reasonable, but you probably want to see what the doctors use.  It takes into account a bit more information.  Again, all of these are just statistics, they're not an individual and they often are outdated.  Also be sure of the sources of your statistics.  Read the actual journals and get a look at their methodology. Don't just go by a newspaper's summary of the article which may not be accurate or present the reliability of the statistics.

    You say she doesn't want to do the radiation. Again, she needs to make sure she has all the facts before she decides. Is she knee jerk reacting from fear or from examining her own situation. Has she talked with women who have done radiation recently?  It is a far cry from what it was like when she was younger and she may have some misperceptions of the current picture.  She also needs to remember that her mind is always going to expect and picture worse than reality.  She has to decide if the impact on her life would be too detrimental for 6 weeks. Again, only she can really tell but she needs to be making a truly informed decision.

    You mention the radiation onc, but has she met with any other oncs to discuss other methods of follow up for recurrence?  Since she's er-,pr- tamoxofin or ai's would not be of any use to her but are there other things that might be considered?  Some people believe in doing the natural route.  Is that part of her decision making? Is she worrying more about the impact or inconvenience of others instead of the bigger picture of herself? Everything needs to go into the decision.

    Personally, I would throw the book at it.  Once it has an invasive component, the foot is in the door; the question is, do you let the door swing open?  Again, that's just my opinion and she needs to decide for herself with all of the information being considered, not only what is presented here.  It's never easy but I'm glad to see she has you being proactive for her. Good luck to her.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    Radiation is only to stop local recurrence. This is why it is usually the recommended course for lumectomy. Since she isn't getting any other treatment (chemo or horomone suppression therapy) she may want to consider it seriously. HER2 status is also something to consider if she did test +

    But if she has heart issues and they are doing this on the left I understand her concern. She really needs to discuss this with her radiation oncolgist. As mentioned above this isn't her grandmother's radiation but there are still risk associated with it just like there are with chemo. Those risks need to be weighed. 66 isn't very old. She still had many years ahead so I understand her concern.

  • NervousNellieTX
    NervousNellieTX Member Posts: 13
    edited October 2010

    Thanks so much for both of your replies.  We have another follow up appt with the breast surgeon on Monday and I will bring up all of these points. 

    My mother doesn't deal well with inconvenience... she was living in LA, in Baton Rouge when Hurricane Katrina hit and she refused to evacuate.  She said she would rather die at home than be displaced for any amount of time.  It wasn't until her electricity was out for several hours that she agreed to come to my house... and that was only because she couldn't live without hot water... she is "high maintenance" if you will, and now lives with me full time.  She is perfectly independent, physically and mentally and I usually have to "choose my battles" with her.  Usually I let her do what she wants, but in this case I feel like she may have to suck it up and deal with treatment. 

    I will add that her sister was also diagnosed with BC, Stage II but got pneumonia during her first round of chemo and passed due to complications.  My mother's argument is that her sister could have lived years, but died because of the treatment. 

    Either way, we have alot to consider and I just want to have an inside perspective on what is truly ideal for her longevity and quality of life. 

    Thanks again!

  • Alyad
    Alyad Member Posts: 817
    edited October 2010

    her sister's history probably plys heavily into her feelings on not wanting treatment. I would urge her to consider that is why she feels the way she does and try to take that out of the equation and weigh what is right for her. Compared to chemo, radiation is much easier and less toxic. Typically the only side effects are some burning and fatigue. Initially at my dx, I just wanted to have surgery and be done with it, put it all behind me. I guess at some point I realized having a bc diagnosis is something that is hard to put behind you regardless and I feel you might as well do everything you can to keep it from coming back. For me asking myself if I would regret not doing everything I could if it came back was important- it might come back anyway, but at least I did everything I could.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    Breast cance is an inconvenience. There is no way around this. It becomes even more of an inconvenience if you don't treated properly. I gues what I'm saying is if there is a recommended course of action and she doesn't want to be inconvenienced she is putting off the inevitable.

    But yes I do understand her concerns regarding her sister. This needs to be discussed with the onologist. It just might have been some one wasn't watching her sister's white counts close enough and she cought  pneumonia. They have Nuelasta for that now. Also she might not be on the same chemo as her sister.

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